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 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 4 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 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 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 9 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 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 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 12 WPIW 2016: Translated Materials 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 Malaysia Mexico Netherlands Poland Portugal Puerto Rico Quebec Romania Russia Spain Sudan Sweden Turkey Uganda USA Venezuela International Regional 13 WPIW 2016: Social Media Activities 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 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 15 WPIW 2016: Media Coverage Section 1 Improving Access to