Sudan Sweden Turkey Uganda USA Venezuela International Regional 2 WPIW 2016: a Common Mission

1 WPIW 2016: An Expanding Community

Section 1 Improving Access to Care for Patients with Primary Immunodefiecy

Section 2 Campaign Highlights

Section 3 Gold Sponsor Snapshots of Events Silver Sponsor

Argentina Austria Belgium Brazil Canada Colombia Egypt France Germany Greece Indonesia Iran Korea Lithuania Libya Malaysia Mexico Netherlands Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 2 WPIW 2016: A Common Mission

Section 1 Improving Access to Care for Test. Diagnose. Treat. Patients with Primary Immunodefiecy

Section 2 Campaign Highlights

Section 3 Snapshots of Events

Argentina Austria Belgium Brazil Canada Colombia Egypt . Drive awareness of Primary . Encourage health authorities . Promote the model of France Germany Immunodeficiencies (PI) to adapt and use WPIW combining physician education Greece Indonesia materials for local health and global awareness with the Iran Korea . Increase understanding of PI information campaigns to infrastructure to diagnose and Lithuania Libya amongst GPs, nurses, parents, drive early diagnosis treat PI Malaysia Mexico school teachers, day care Netherlands . Stimulate national outreach Poland employees, governments and . Stimulate efforts to improve Portugal towards governments by Puerto Rico the public diagnosis, treatment and QoL Quebec promoting use of the PI Romania Russia ‘advocacy’ tool kit with key Spain Sudan material and argumentation Sweden Turkey Uganda USA Venezuela International Regional 3 WPIW 2016: The Website

Section 1 Improving Access to Care for Patients with Primary Immunodefiecy

Section 2 Campaign Highlights

Section 3 Snapshots of Events

Section 1 Improving Access to Care for Patients with Primary Immunodefiecy

Section 2 Campaign Highlights

Section 3 Snapshots of Events

Argentina Austria Belgium Brazil Canada Colombia Story book Local resources Online presence Egypt France Germany Greece The story book is the platform Materials exist in increasing The website has direct links to Indonesia Iran where patients become the number of languages to support WPIW Facebook, Twitter, Korea Lithuania protagonists of the campaign campaigns in local communities Instagram and YouTube accounts Libya Malaysia sharing their experience with the as well as a live Twitter Feed. Mexico Netherlands wider public Poland Portugal Puerto Rico Quebec Romania Generated 108 stories to Materials produced in: Arabic Greatly increased global Russia Danish, Farsi, French, German, Spain date!! reach of the campaign! Sudan Italian, Norwegian, Portuguese, Sweden Provides valuable insights Turkey Romanian, Serbian, Spanish, Uganda into patients and their needs USA Swedish and Ukrainian. Venezuela International Regional 5 WPIW 2016: Website - Key Features

Section 1 Improving Access to Care for Patients with Primary Immunodefiecy

Section 2 Campaign Highlights

Section 3 Snapshots of Events

Argentina Austria Belgium Brazil Canada Colombia Egypt France Germany Greece Share your event Get Inspired Mobile Responsiveness Indonesia Iran Korea Lithuania Libya The Get Involved section provides The website includes practical toolkits The mobile responsiveness of the website Malaysia access to an online global map allows access to the WPIW website from Mexico for supporters to organise their events, Netherlands allowing to promote events and all smart phones / mobile devices. Poland conduct media activities, reach out to Portugal find information on what is local authorities, and showcase best Puerto Rico Quebec happening during WPIW editions practice Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 6 WPIW 2016: Website - New Features

Section 1 Improving Access to Care for Patients with Primary Immunodefiecy

Section 2 Campaign Highlights

Section 3 Snapshots of Events

Argentina Austria Belgium Brazil Canada Colombia Egypt France Germany Greece Indonesia Iran Korea Lithuania Libya Call to Action Malaysia Sample tweets and posts Mexico Netherlands Poland Portugal A new social media section provides advice on A specific Call to Action was developed in line Puerto Rico how to engage on social media and list a series of with WPIW 2016 theme : Improving Access to Quebec Romania sample tweets and posts and references key care for PI patients and was promoted on the Russia Spain hashtags to be used. WPIW website, inviting visitors to sign the Sudan Sweden petition Turkey Uganda USA Venezuela International Regional 7 WPIW 2016: New Materials

Section 1 Improving Access to Care for Patients with Primary Immunodefiecy

Section 2 Campaign Highlights New Poster! Section 3 Snapshots of Events New eBanners! Updated Infographic! Argentina Austria Belgium Brazil Canada Colombia Egypt France Germany Greece Indonesia Iran Korea Lithuania Libya Malaysia Mexico Netherlands Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 8 WPIW 2016: Press Announcements

Section 1 Improving Access to Care for Patients with Primary Immunodefiecy

Section 2 Campaign Highlights

Section 3 Snapshots of Events

Section 2 Campaign Highlights

Section 3 Snapshots of Events

Argentina Austria Belgium Brazil Canada Colombia CAMPAIGN Egypt France Germany Greece Indonesia Iran Korea Lithuania Libya HIGHLIGHTS Malaysia Mexico Netherlands Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 10 WPIW 2016: Scientific Editorial

Section 1 Improving Access to Care for Patients with Primary Immunodefiecy “Stakeholders united under the World PI Week banner raise their voices this year again to call on decision-

Section 2 makers, health authorities, healthcare funders, and professionals to put in place the relevant mechanisms to Campaign Highlights ensure that all PI patients can receive safe, efficient and appropriate treatments and optimum care Section 3 throughout the world, for both their own health benefit, and the long-term benefit of the health system”. Snapshots of Events

Argentina Austria Belgium Brazil Canada Publications Colombia Egypt France Germany . Journal of Clinical Immunology Greece Indonesia (JOCI) Iran Korea Lithuania Libya . LymphoSign Journal Malaysia Mexico Netherlands Poland . News and EFIS Portugal Puerto Rico Quebec . Romania JMF Online Russia Spain Sudan . PPTA Online Sweden Turkey Uganda USA . Ongoing post WPIW submissions of Venezuela International the Editorial in Regional other journals 11 WPIW 2016: Scientific Editorial

Section 1 Improving Access to Care for Patients with Primary Immunodefiecy

Section 2 Campaign Highlights

Section 3 Snapshots of Events

Section 1 Improving Access to Care for Patients with Primary Immunodefiecy

Section 2 Campaign Highlights

Section 3 Snapshots of Events

Section 1 . Platform of engagement for international Improving Access to Care for scientific societies, nurses, patients’ group, Patients with Primary Immunodefiecy industry and specialised media Section 2 Campaign Highlights . Dedicated hashtags: #WorldPIWeek , #WPIW, Section 3 #Piawareness, #primaryimmunodeficiency Snapshots of Events @WorldPIWeek

Argentina Austria Belgium Brazil World PI Week on Facebook, Twitter Canada Colombia Egypt and Instagram France Germany Greece Indonesia . 1000 likes on FaceBook Iran Korea Lithuania . 500 followers on Twitter Libya Malaysia Mexico . On-going dialogue on the development of the Netherlands campaign Poland Portugal Puerto Rico . Ideal platforms for sharing pictures of Quebec Romania activities during the week Russia Spain Sudan . Driver for new petition signatures, event and Sweden Turkey story sharing Uganda USA Venezuela . Interaction amongst widespread local International organisations Regional . Platform for updates on rare disease-related 14 discussion WPIW 2016: the Power of Social Media

Section 1 Improving Access to Care for Patients with Primary Immunodefiecy World PI Week on Facebook, Twitter

Section 2 Campaign Highlights

Section 3 Snapshots of Events

Section 1 Improving Access to Care for Patients with Primary Immunodefiecy

Section 2 Campaign Highlights

Section 3 Snapshots of Events

Section 1 Improving Access to Care for Patients with Primary 2016 Call to Action Immunodefiecy

Section 2 Campaign Highlights . Dedicated 2016 Call to Action in line with Section 3 Snapshots of Events 2016 Scientific Editorial

Argentina Austria . Direct invitation to sign the online petition Belgium 1383 Brazil Canada Colombia Egypt Number of Signatures in 2016 France Germany Greece Indonesia Iran Korea . +256 Lithuania Libya signatures Malaysia Mexico since January Netherlands 2016 Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 17 WPIW 2016: Country Involvement

Section 1 Improving Access to Care for Patients with Primary Immunodefiecy

Section 2 47 countries reported their Campaign Highlights involvement Section 3 Snapshots of Events Many more events taking place Argentina Austria across the globe Belgium Brazil Canada Colombia Egypt France Germany Germany Greece Austria Indonesia Greece Iran Australia Korea Hungary Lithuania Argentina Libya Iceland Malaysia Azerbaijan Mexico Belgium India Netherlands Poland Bosnia Ireland Portugal Morocco Puerto Rico Brazil Iran Slovakia United Kingdom Quebec Norway Romania Bulgaria Italy Slovenia Ukraine Russia Peru Spain Canada Israel South Africa United States (appr 25 States) Sudan Poland Sweden Chile Kazakhstan Spain Venezuela Turkey Portugal Uganda Colombia Japan Sweden USA Romania Venezuela Czech Republic Lithuania Switzerland International Russia Regional Egypt Malaysia Taiwan Serbia France Mexico Turkey 18 WPIW 2016: Patient Stories

Section 1 Improving Access to Care for Patients with Primary Immunodefiecy . 33 New Stories Section 2 Campaign Highlights . Patients from 4 Continents Section 3 Snapshots of Events

Argentina . Increased interaction of Austria Belgium patients with the campaign Brazil Canada Colombia . Egypt Increased global awareness France of PI Germany Greece Indonesia Iran . Increased recognition of the Korea Lithuania WPIW campaign Libya Malaysia Mexico Netherlands Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 19 WPIW 2016: Promotion

Section 1 Improving Access to Care for Patients with Primary Immunodefiecy WPIW Official Press Release Government Endorsement Online Presence Section 2 Campaign Highlights

Section 3 . WPIW official PR used by . . Increased recognition in Snapshots of Events Greater involvement of NMOs to drive successful health authorities and the rare diseases Argentina Austria media activities more outreach to campaign Belgium Brazil government and policy Canada . Colombia . WPIW supported Rare Disease makers Broadened audience and Egypt France Day through press release and reach through social Germany media Greece social media . Targeted communication Indonesia Iran at local level for NMO Korea . WPIW logo included on the . Campaign anticipated Lithuania engagement with policy Libya official ‘Friends of Rare and ‘rooted’ in NMOs Malaysia makers Mexico Diseases Day 2016’ for the annual activities Netherlands Poland fourth consecutive year Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 20 SNAPSHOTS OF EVENTS

21 Argentina – Training and Q&A Sessions

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . PID patients associations from Argentina Campaign Highlights (AAPIDP) Section 3 Snapshots of Events Action: Argentina Austria Several events were held : Belgium Brazil Canada . A training workshop about Colombia Egypt immunoglobulin infusion France Germany conducted by two nurses from Greece Indonesia Prof Juan P. Garrahan Pediatrician Iran Korea Hospital specialised on PIDs Lithuania Libya Malaysia . A Q&A session “Talk with the Mexico Netherlands specialists, questions and Poland Portugal answers”, with 9 immunologist Puerto Rico Quebec from different public hospitals of Romania Russia Argentina. Spain Sudan Sweden . A design art workshop and magic Turkey Uganda show for children. USA Venezuela International Regional

Supported through IPOPI’s WPIW National Implementation Programme22 Austria – Press Briefing

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . Austrian self-help for Primary Campaign Highlights Immunodeficiencies organisation (Öspid) Section 3 Snapshots of Events Action: Argentina Austria Belgium Brazil Canada . Press briefing to 10 Austrian Colombia Egypt Journalists about Primary France Germany Immunodeficiency. Greece Indonesia Iran . High caliber podium with Korea Lithuania national PI experts present and Libya Malaysia giving speeches and Mexico Netherlands presentations. Poland Portugal Puerto Rico . Information booth and Quebec Romania presentation Russia Spain Sudan . Distribution of information Sweden Turkey materials in hospitals Uganda USA Venezuela . Lecture in a plasma centre International Regional 23 Belgium – Family Day

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . Belgian Primary Immunodeficiency Group Campaign Highlights (BOPPI) Section 3 Snapshots of Events

Argentina Action: Austria Belgium Brazil Canada Colombia . BOPPI organized its fourth national family Egypt France day gathering many patients and their Germany Greece families. Indonesia Iran Korea . Medical workshops and open forums were Lithuania Libya held around the theme “Growing up with a Malaysia Mexico PID”. Netherlands Poland Portugal . Launched World PI Week with a balloon Puerto Rico Quebec launch. Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 24 Brazil – Conference

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . Brazilian Group for Campaign Highlights Immunodeficiency (BRAGID) Section 3 Snapshots of Events

Argentina Action: Austria Belgium Brazil Canada Colombia . Launched balloons all around Brazil Egypt to raise awareness of primary France Germany immunodeficiency as well as Greece Indonesia promote World PI Week Iran Korea Lithuania . Organized and held the II BRAGID Libya Malaysia Meeting in Sao Paulo on 28-30 April Mexico Netherlands to discuss and debate important Poland topics in Primary Immunodeficiency Portugal Puerto Rico Quebec . Discussion at Pequeno Principe Romania Russia Hospital about warning signs, how to Spain Sudan investigate and treat PI, etc. with Sweden Turkey emphasis on hematopoietic stem cell Uganda transplantation. The event gathered USA Venezuela medical staff, nurses, residents and International Regional medical students. 25 Canada – 10 Warning Signs Video

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . Immunodeficiency Canada Campaign Highlights

Section 3 Snapshots of Events Action: Argentina Austria Belgium Brazil . 10 Warning Signs video was produced and Canada Colombia promoted all over the country (including via a Egypt France press release) and picked up by 82 English Germany Greece media worldwide Indonesia Iran . Video Release at Hard Rock Café Toronto and Korea Lithuania played on large digital outdoor screen in public Libya Malaysia places from various cities in the country Mexico Netherlands Poland . Balloons Toronto Tour Portugal Puerto Rico . World PI Week promotion through Quebec Romania advertisements, social media, online newsletter Russia Spain and website. Sudan Sweden Turkey . World PI Week promotional materials Uganda USA distributed to 16 healthcare centres across Venezuela International Canada asking them to participate with local Regional events. 26 Colombia – Symposium

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . Fundación FIP Campaign Highlights

Section 3 Snapshots of Events

Argentina Austria Belgium Brazil Canada Colombia Egypt France Germany Greece Indonesia Iran Korea Lithuania Libya Malaysia Mexico Netherlands Poland Portugal Puerto Rico Action: Quebec Romania Russia Spain . Organized the VI National Symposium on Sudan Sweden Primary Immunodeficiency Turkey Uganda USA Venezuela . Launched balloons all around the country to International Regional raise awareness of primary immunodeficiency as well as promote World PI Week 27 Egypt – Balloons and Bubbles

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . African Society of Immunodeficiencies Campaign Highlights (ASID) - NADA Society Section 3 Snapshots of Events

Argentina Austria Action: Belgium Brazil Canada Colombia . Ceremony at the Al-Azhar Park in Cairo Egypt France Germany . Balloons and bubbles launch to raise Greece Indonesia awareness of primary immunodeficiency Iran Korea as well as promote World PI Week Lithuania Libya Malaysia . Animations with games for kids and Mexico Netherlands students Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 28 France – Infographic

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy Section 2 . Association de Patients Deficits Campaign Highlights Immunitaires Primitifs (IRIS) Section 3 Snapshots of Events

Argentina Austria Action: Belgium Brazil Canada Colombia Egypt . Produced a new infographic and shared it France Germany widely on social media Greece Indonesia Iran Korea Lithuania Libya Malaysia Mexico Netherlands Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional

Supported through IPOPI’s WPIW National Implementation Programme 29 Germany – 25th Anniversary

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . German Patient Organisation for Primary Campaign Highlights Immunodeficiencies (DSAI) Section 3 Snapshots of Events

Argentina Austria Belgium Brazil Canada Colombia Egypt France Germany Action: Greece Indonesia Iran Korea . DSAI celebrated its 25th anniversary Lithuania Libya together with doctors, members, politicians Malaysia Mexico and patrons Netherlands Poland . A Medical education event was held Portugal Puerto Rico . DSAI held its annual meeting with the Quebec Romania participation of the Bavarian Government Russia Commissioner for Patient Affairs; magician Spain Sudan and ringmaster André Sarrasani and actress Sweden Turkey Michaela Schaffrath Uganda USA . A balloons launch was organised in Leipzig Venezuela International Regional 30 Supported through IPOPI’s WPIW National Implementation Programme Greece - Conference

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . ARMONIA e.g the Association of Friends of Campaign Highlights Patients with Primary Immunodeficiency - Section 3 Clinical Immunology in collaboration with Snapshots of Events the Immunology-Histocompatibility Argentina Austria Department of “Aghia Sophia” Children’s Belgium Brazil Hospital Canada Colombia Egypt France Germany Action: Greece Indonesia Iran . Conference on Primary Korea Lithuania Immunodeficiencies Paediatric Libya Malaysia Immunology at the Museum of Cycladic Art Mexico Netherlands in Athens to train doctors for early Poland Portugal diagnosis and proper, lifesaving therapies Puerto Rico Quebec for PI patients Romania Russia Spain Sudan . Scientific Symposium with physicians and Sweden Turkey patients with international experts Uganda USA Venezuela International . Ceremony and lectures Regional 31 . Information and distribution of PID leaflets Supported through IPOPI’s WPIW National Implementation Programme Indonesia – Doctors and Patients Meeting

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . Indonesian PI Patients Society for Primary Campaign Highlights Immunodeficiency Section 3 Snapshots of Events

Argentina Austria Action: Belgium Brazil Canada Colombia . Organized a doctor- patient meeting to Egypt France share information and answer questions Germany Greece from patients, carers and family members Indonesia Iran Korea Lithuania . Organised a walk to raise awareness Libya Malaysia Mexico Netherlands Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 32 Supported through IPOPI’s WPIW National Implementation Programme Iran – Zebra Cake

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 Campaign Highlights . Immunology, Asthma and Allergy Research

Section 3 Institute - IAARI Snapshots of Events

Argentina Austria Belgium Brazil Action: Canada Colombia Egypt . Celebrated World PI France Germany Week in Iran with a Greece Indonesia "Patient-Healthcare Iran Korea Providers" gathering Lithuania Libya with lectures and Q&A Malaysia Mexico sessions. Netherlands Poland . Organized fun activities Portugal Puerto Rico for kids with puzzles, Quebec Romania balloons, gifts and a Russia Spain cake. Sudan Sweden Turkey . Organized the 8th Uganda USA International Venezuela International Conference on Regional Immunodeficiency Diseases 33 Korea – Awareness Raising

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 Campaign Highlights . PID Support Group

Section 3 Snapshots of Events

Argentina Austria Action: Belgium Brazil Canada Colombia . Organized an awareness raising event on Egypt France May 21st at the Samsung Medical Centre Germany Greece in Seoul Indonesia Iran Korea Lithuania Libya Malaysia Mexico Netherlands Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 34 Lithuania – Awareness Raising

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 Campaign Highlights . Kaunas clinics

Section 3 Snapshots of Events

Argentina Action: Austria Belgium Brazil Canada . Organized an awareness raising event with Colombia Egypt lectures from health professionals and France Germany discussions with patients, which ended Greece Indonesia with a balloon launch Iran Korea Lithuania Libya Malaysia Mexico Netherlands Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 35 Libya – Lectures

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 Campaign Highlights . The Arab Society of Primary

Section 3 Immunodeficiency - ARAPID Snapshots of Events

Argentina Austria Action: Belgium Brazil Canada Colombia . Lectures at the Children’s Hospital in Egypt France Tripoli entitled “A practical approach to Germany Greece a case of PID" and "Libya Experience of Indonesia Iran PID" Korea Lithuania . The day was covered by the national TV Libya Malaysia channel. Mexico Netherlands Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 36 Malaysia – Balloons and Bubbles

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . MyPOPI - AMSA Malaysia Campaign Highlights

Section 3 Snapshots of Events

Argentina Austria Action: Belgium Brazil Canada Colombia . Awareness raising event including a Egypt France balloons launch, which Miss Malaysia Germany Greece (world winner) attended Indonesia Iran . Korea Blood glucose level testing Lithuania Libya . Walk for hope Malaysia Mexico Netherlands Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 37 Supported through IPOPI’s WPIW National Implementation Programme Mexico – Awareness Raising

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy Section 2 . Campaign Highlights Fumeni

Section 3 Snapshots of Events

Argentina Austria Action: Belgium Brazil Canada Colombia . Held a Balloons Launch Egypt France Germany . A Latin America Immunoglobulin Greece Indonesia Summit was organized to discuss Iran new facts of IgG replacing Korea Lithuania therapies for PID and as an Libya Malaysia immune modulator for other Mexico Netherlands autoimmune diseases Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 38 Supported through IPOPI’s WPIW National Implementation Programme Netherlands – Roundtable discussion

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 Campaign Highlights . Stichting voor Afweerstoornissen - SAS

Section 3 Snapshots of Events

Argentina Austria Action: Belgium Brazil Canada Colombia . A Roundtable on Immune Disorders was Egypt France organized gathering physicians, PI experts, Germany Greece researchers, nurses and family carers to Indonesia Iran discuss Primary Immunodeficiency Korea Lithuania treatments, around the “Burden of Libya Malaysia Treatment Study” Mexico Netherlands Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 39 Poland – Celebrations with Games & Balloons

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy . ImmunoProtect Section 2 Campaign Highlights

Section 3 Action: Snapshots of Events

Argentina Austria . Held a balloon release to raise awareness Belgium Brazil for primary immunodeficiency Canada Colombia Egypt . Info session and games with kids France Germany Greece . PI Patients’ Day in Krakow Children Indonesia Iran Hospital gathering some 80 guests and Korea Lithuania excellent speakers Libya Malaysia Mexico Netherlands Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional Supported through IPOPI’s WPIW National Implementation Programme 40 Portugal – Family Day

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . Portuguese Primary Immunodeficiency Campaign Highlights Patient Association (APDIP) Section 3 Snapshots of Events Action:

Argentina Austria . Balloons launch Belgium Brazil Canada Colombia . Held two events: a Family Day and a Egypt France Health Day: Germany Greece Indonesia Family Day: “V Meeting of Families with Iran Korea IDP” was held in Coimbra, at the Live Lithuania Libya Science Exploratory Centre Malaysia Mexico Netherlands Health Day: “III Walk for Health” in Poland Portugal Bélem and Lisbon. Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 41 Supported through IPOPI’s WPIW National Implementation Programme Puerto Rico – 1st WPIW Celebrations

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . Association for Immunodeficiency Patients Campaign Highlights in Puerto Rico (APIP) Section 3 Snapshots of Events Action: Argentina Austria Belgium Brazil . One day conference gathering Canada Colombia physicians, government representatives, Egypt France industry and APIP members Germany Greece Indonesia . April declared the official month of Iran Korea Primary Immunodeficiency in Puerto Lithuania Libya Rico. Malaysia Mexico Netherlands . Patients and Family Education Event on Poland Portugal Saturday, April 23 targeting both adults Puerto Rico Quebec and children. Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional

Supported through IPOPI’s WPIW National Implementation Programme 42 Quebec – ‘My Life is Better!’ Conference

Section 1 Who: Improving Access to Care for Patients with Primary Immunodefiecy . The Association des Patients Section 2 Campaign Highlights Immunodéficients du Québec (APIQ)

Section 3 Action: Snapshots of Events . Organized a Free conference on "MY Argentina Austria LIFE IS BETTER" which was open to Belgium Brazil anyone who wanted to attend. Aimed at Canada Colombia promoting a better life for all Primary Egypt France immunodeficiency patients Germany Greece Indonesia Iran Korea Lithuania Libya Malaysia Mexico Netherlands Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 43 Romania – PID Hope Train

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy . Arpida Association – Rumanian Patient Section 2 Campaign Highlights Association

Section 3 Action: Snapshots of Events

Argentina Austria . PID Hope branded train travelled around Belgium Brazil the city with kids and balloons Canada Colombia Egypt . Balloons launch took place in presence France Germany of patients, doctors , youth in town who Greece Indonesia tried to send a message of support to all Iran Korea those affected by PI Lithuania Libya Malaysia . Distribution of flyers and material on Mexico Netherlands WPIW Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 44 Supported through IPOPI’s WPIW National Implementation Programme Russia – Awareness raising

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy . Foundation for ‘Sunflower’ Section 2 Campaign Highlights

Section 3 Snapshots of Events

Argentina Austria Action: Belgium Brazil Canada . Bubbles and balloons Colombia Egypt launch to promote a better France Germany life for PI patients Greece Indonesia Iran Korea . Meeting between patients, Lithuania Libya doctors and scientists Malaysia Mexico Netherlands Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 45 Spain – Gathering for PI

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . Spanish Association of Primary Campaign Highlights Immunodeficiency (AEDIP) Section 3 Snapshots of Events . PID Foundation

Argentina Austria Belgium Brazil Canada Colombia Action: Egypt France Germany Greece . Held a balloon launch Indonesia Iran to make Primary Korea Lithuania Immunodeficiency Libya Malaysia visible worldwide Mexico Netherlands Poland . One day medical event Portugal Puerto Rico aimed to raise Quebec Romania awareness of PIDs Russia Spain amongst physicians Sudan Sweden Turkey . Games and awareness Uganda USA raising activities for Venezuela International children Regional 46 Supported through IPOPI’s WPIW National Implementation Programme Sudan – Educational Meeting

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . Arab Society of Primary Immunodeficiencies (ARAPID) Campaign Highlights

Section 3 Snapshots of Events

Argentina Austria Action: Belgium Brazil Canada . Lecture given in specialized Colombia Egypt medical building France Germany Greece Indonesia . Educational meeting in Iran Korea immunology for physicians in Lithuania Libya various specialties Malaysia Mexico Netherlands Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 47 Sweden – Communicating on PI

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . Swedish Patients Organisation (PIO) Campaign Highlights

Section 3 Snapshots of Events Action:

Argentina Austria . Exhibitions to raise Belgium Brazil awareness about PI in Canada Colombia university hospitals Egypt France Germany . Press releases in local Greece Indonesia media, posters, Iran Korea interview on the radio, Lithuania Libya social media campaign Malaysia Mexico Netherlands . Wide dissemination of Poland Portugal the organization's Puerto Rico Quebec magazine to Health Romania Russia Care Centers, hospital Spain Sudan departments, Sweden Turkey government bodies Uganda USA Venezuela . Launch of a revised International Regional website 48 Turkey – Balloons

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . IMYED - Medical community Campaign Highlights

Section 3 Snapshots of Events Action:

Argentina Austria Belgium . Held a Balloon release to raise Brazil awareness for Primary Canada Colombia Immunodeficiency Egypt France Germany Greece Indonesia Iran Korea Lithuania Libya Malaysia Mexico Netherlands Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 49 Uganda – Balloons for kids

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . UPPID Campaign Highlights Action: Section 3 Snapshots of Events

Argentina . Held a balloon Release Austria Belgium Brazil Canada Colombia Egypt France Germany Greece Indonesia Iran Korea Lithuania Libya Malaysia Mexico Netherlands Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 50 USA – Raising Awareness

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . Immune Deficiency Foundation (IDF) Campaign Highlights Action: Section 3 Snapshots of Events

Argentina IDF Meetings & Events Austria Belgium Brazil Canada . One-day education meetings Colombia Egypt IDF Family Conference Days France held throughout the US in April Germany CIS Annual Meeting Greece Indonesia Iran . IDF Get Connected Groups Korea Lithuania meetings held throughout the Libya US in April CIS & IDF Partnership Malaysia Mexico Netherlands . IDF educational materials mailed Poland . IDF Nurse Advisory Committee Portugal to all CIS members (more than IDF Get Connected Group meeting in Burke, VA Puerto Rico Meeting Quebec 600) Romania Russia . IDF Advocacy Day on April 21st Spain . Joint Press release on partnership Sudan in Washington D.C. 75 Sweden volunteers representing 35 Turkey . Uganda States attended 160 meetings PI Awareness T-shirts distributed USA Venezuela with legislators to promote PI to participants of CIS Annual International Meeting Regional awareness and advocate for community 51

Advocacy Day, Washington DC Watch the IDF USA – Raising Awareness Thank you video here Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . Immune Deficiency Foundation (IDF) Campaign Highlights Action: Section 3 Snapshots of Events

Argentina Communications and Materials Austria Belgium Brazil . Featured WPIW on IDF Website which received 130,592 Canada Colombia sessions/visitors in April 2016 Egypt France Germany . Created a new International Section on IDF website with IDF Greece Indonesia materials made available in various languages Iran Korea Lithuania . Libya Published 4 blog features on IDF Blog throughout April and IDF staff, Towson, MD Malaysia emailed more than 26,000 people to share how they could Mexico Netherlands help spread awareness in just 5 simple ways Other activities: Poland Portugal Puerto Rico . Highlighted WPIW in IDF Advocate Newsletter and e- . Quebec IDF staff helped spread awareness in Romania Newsletter, approx. 40,000 and 20,000 recipients, Towson, MD thanks to TZ the IDF Zebra, Russia Spain respectively the official IDF mascot Sudan Sweden Turkey . Distributed WPIW Press Release in U.S . SCID Screening for newborns started in Uganda USA IDF home state Maryland Venezuela . Conducted very successful social media awareness International Regional campaigns on Facebook, Twitter, Instagram and LinkedIn . Launch of IDF Plasma Partners Program 52 USA & International – Widespread Action

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . Jeffrey Modell Foundation (JMF) Campaign Highlights

Section 3 Action: Snapshots of Events

Argentina . Funded events in Centres in 110 locations, 45 Austria Belgium countries Brazil Canada Colombia . Held an “Uplifting” event in New York, USA Egypt France Germany . Continued Social media action during the week Greece Indonesia through Facebook, Twitter and Instagram Iran Korea Lithuania . Distribution and coverage of World PI Week release Libya Happy Annual JMF WPIW Malaysia Mexico . Creation and delivery of dedicated communication Balloon Launch Day! Netherlands Poland and to raise awareness Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional Uplifiting event, NYC 53 USA & International – Widespread Action

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy

Section 2 . Jeffrey Modell Foundation (JMF) Campaign Highlights

Section 3 Action: Snapshots of Events

Argentina Austria Belgium . “Burst the bubble” for PI celebrations Brazil Canada Colombia . Simultaneous launch of thousands of specially Egypt France designed balloons at Jeffrey Modell Diagnostic and Germany Research Centers throughout throughout Europe, Greece Indonesia Eastern Europe, Latin America, Asia, Africa, United Iran Korea States and Middle East Lithuania Libya Malaysia Mexico Netherlands Czech Brazil Poland Portugal Republic Puerto Rico Quebec China Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Ukraine Regional 54 Venezuela – Sharing Information

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy Section 2 . Asociación Civil Immunodeficiencias Campaign Highlights Primarias-Venezuela (AC IDP Section 3 Snapshots of Events Venezuela)

Argentina Action: Austria Belgium Brazil . A series of conferences Canada Colombia were held throughout Egypt France the week to teach to Germany evaluate, diagnose and Greece Indonesia treat primary Iran Korea immunodeficiency Lithuania Libya Malaysia . A launch of balloons Mexico Netherlands took place and a party Poland with the patients was Portugal Puerto Rico organized Quebec Romania Russia . Info sessions took place Spain Sudan in hospitals to inform Sweden Turkey physicians, nurses, Uganda patients and the general USA Venezuela public International Regional 55 Venezuela

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy . Asociación Civil Inmunodeficiencias Section 2 Campaign Highlights Primarias Venezuela (IDPVenezuela)

Section 3 Snapshots of Events Action:

Argentina Austria Belgium . A series of conferences were held to Brazil Canada teach to evaluate, diagnose and Colombia Egypt treat primary immunodeficiency France Germany Greece . A launch of balloons took place and a Indonesia Iran party with the patients was organized. Korea Physicians, patients, friends and sponsors Lithuania Libya collaborated as one to spread all Malaysia Mexico information available Netherlands Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 56 International – Raising Awareness

Section 1 Improving Access to Care for Who: Malaysia Patients with Primary Immunodefiecy . International Patient Organisation for Section 2 Campaign Highlights Primary Immunodeficiencies (IPOPI) Portugal Section 3 Action: Snapshots of Events

Argentina Austria . Provided support to 14 National Member Organisations Belgium Puerto Rico Brazil (NMO) for local implementation of WPIW through Canada Colombia family events, medical lectures, media outreach Egypt France campaigns, information materials, etc. Germany Greece Indonesia . Launched Burden of Treatment Survey on 27 April. Iran Korea Lithuania Libya . Released 3 new leaflets Argentina Malaysia Mexico Netherlands Poland . Recorded patient testimonials at NMO WPIW events in Portugal Puerto Rico Spanish, Portuguese, German Quebec Romania Russia Spain . Communication and awareness raising on social media Sudan Sweden with great turn out Turkey Uganda USA Venezuela International Regional 57 International – Raising Awareness

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy . International Patient Organisation for Section 2 Campaign Highlights Primary Immunodeficiencies (IPOPI)

Section 3 Action: Snapshots of Events

Argentina Austria . Held IPOPI 2016 Asian Regional Patient Belgium Brazil Meeting gathering patients from 10 Asian Canada Colombia meetings for the first time Egypt France Germany . Held a specific workshop at IPOPI’s Asian Asian Regional Patient Meeting Greece Indonesia Regional Patient Meeting to further Iran Korea disseminate the principles of care. Lithuania Libya Malaysia . Creation of an Implementation Package for Mexico Netherlands principles of care Poland Action: Portugal Puerto Rico Quebec . Organized a policy event at the European Parliament Romania Russia with 3 Members of European Parliament from 3 main Spain Sudan political groups and 12 patient and physicians from 12 Sweden Turkey different countries in Europe and Africa, joined by Uganda industry representatives and other interested USA Venezuela stakeholders. The event ended with the signature of International Regional the 2016 Call for Action Improving access to care for Policy event at European Parliament patients with Primary Immunodeficiencies 58 International – Awareness Activities

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy . International Nursing Group for Section 2 Campaign Highlights Immunodeficiencies (INGID)

Section 3 Action: Snapshots of Events

Argentina Austria . INGID is supporting nurses worldwide to promote Belgium Brazil primary immunodeficiency and world PI week Canada Colombia awareness with educational activities Egypt France Germany Greece . Balloon launches in different locations Indonesia Iran Korea . Lithuania Distribution of educational materials Libya Malaysia Mexico . Strong presence on social media (Facebook, Twitter) Netherlands Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 59 Regional – Raising Awareness

Section 1 Improving Access to Care for Who: Patients with Primary Immunodefiecy . European Federation of Immunological Section 2 Campaign Highlights Societies (EFIS)

Section 3 Action: Snapshots of Events

Argentina th Austria . Celebrated “The Day of Immunology” on 29 April with Belgium Brazil the theme: “The promise of Immunotherapy” Canada Colombia Egypt . France Provided Members with campaign materials and Germany Greece support to organize local activities Indonesia Iran Korea . Organized together with International Union of Lithuania Libya Immunological Societies (IUS) an Award prize to reward Malaysia Mexico best 2016 campaigns as per the “Dol Award” Netherlands Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela Read more International Regional 60 61 GOLD SPONSOR SILVER SPONSOR