Aim of the EHC Conference

GUIDELINES FOR HOSTING THE ANNUAL EHC CONFERENCE

The European Haemophilia Consortium (EHC) is an organisation that includes and represents the European national haemophilia patient associations (National Member Organisation – NMOs) from 45 countries in Europe including 27 EU Member States.

Aim of the EHC Conference Since the first EHC Conference in 1989, the national patient organisations have gathered and discussed matters of treatment, improving quality of life, new drugs and shared successes and developments. Every year the number of conference attendees increases.

The target group for the EHC Annual Conferences includes all EHC NMOs and other interested parties, such as other patient organisations, representatives of EU institutions, medical doctors, physiotherapists and other healthcare providers within haemophilia and pharmaceutical companies. The General Assembly (also known as the Business Meeting) is only for EHC NMO delegates. Currently, the annual conference attracts between 200 to 300 delegates.

The following guidelines are based on the experiences of the previous international conferences and reflect the mission of the EHC. These guidelines are meant to help conference-host applicants to formulate their proposals, as well as to clarify the roles and responsibilities of both the EHC and the local Host NMO.

Conference Programme The format of the conference is a three-day conference starting on Friday and finishing at midday on Sunday. The Conference Organising Committee (COC) should consist of the EHC President, Vice President Finance and the CEO and three nominations from the Host NMO. The Professional Conference Organisers (PCO) shall attend all meetings of the COC and provide the secretariat for the COC.

The template for the conference timing is set with pre-determined time slots for the Scientific Programme content, the EHC General Assembly and the Pharmaceutical Symposia.

A Scientific Programme Committee consisting of four representatives from the Host NMO, including doctors, and four nominated from among the EHC Steering Committee and EHC Medical Advisory Group, formulates the Scientific Programme content. The Scientific Programme must receive final approval by the EHC Steering Committee.

Format - Conference Template The conference format shall be as follows:

Thursday 19.00 Arrivals

Friday 08.30 - 10.00 General Assembly 10.00 - 10.30 Coffee Break 10.30 - 12.30 General Assembly 12.30 - 13.30 Lunch 13.30 - 14.30 Scientific Programme 14.30 - 16.00 Pharmaceutical Symposium 1 16.00 - 16.30 Coffee Break Page 2 of 7

16.30 - 18.00 Pharmaceutical Symposium 2 18.00 - 19.00 Scientific Programme 19.30 - 21.00 Welcome Reception and Buffet Dinner

Saturday 08.30 - 10.00 Pharmaceutical Symposium 3 10.00 - 10.30 Coffee Break 10.20 – 12.00 Scientific Programme 12.00 - 13.30 Pharmaceutical Symposium 4 13.30 - 14.30 Lunch 14.30 - 16.00 Scientific Programme 16.00 - 16.30 Coffee Break 16.30 - 18.00 Pharmaceutical Symposium 5 19.00 - 24.00 Coach Departures and Conference Dinner (external)

Sunday 08.30 - 10.00 Scientific Programme 10.00 - 10.30 Coffee Break 10.30 - 12.00 Pharmaceutical Symposium 6 12.00 - 13.30 Scientific Programme 13.30 - 13.45 Closing Remarks and Departures

Parallel Sessions may be organised at the conference by agreement.

The EHC Steering Committee may decide to add additional workshops or sessions for NMOs to the main conference programme. The additional costs of these workshops, if organised, will not form part of the main conference budget.

Length and Dates of the Conference Based on the above format, minimum two and a half days are required to host the Annual EHC Conference. Unless circumstances dictate otherwise, the conference shall take place on the first Friday, Saturday and Sunday in October each year. However, other dates may also be considered.

Venue and Facilities City Centre Hotels of a four-star rating are the most appropriate place to host the conference, but other locations will also be considered. The hosting city should ideally have good access by air and rail to European cities. The location should be relatively easy and inexpensive to reach: please indicate distance, average time and costs for reaching the conference venue from the main airport, railway station, etc.

The location should allow for hosting a large number of participants – from 250 to 400 people. A registration area, a large conference room for plenary sessions, a minimum of 3 or 4 medium rooms for one possible parallel session, treatment room, speaker preview room, business meeting room and a large common space for the exhibition and coffee breaks etc., should be available within the same building. Conference rooms should be equipped for both PowerPoint and overhead presentations. Access to facilities such as WIFI is necessary.

Conference Language The official conference language is English with simultaneous translation to Russian in plenary sessions. Therefore, the main conference room should have space for translation booths. Page 3 of 7

Accommodation The conference venue should be able to provide sufficient accommodation for the duration of the event for all attendees. Applicants should indicate the type of accommodation and nearby suitable accommodation and number of rooms available, including disability rooms, and provide a range of costs. Please note that cheap but comfortable accommodation should also be available for delegates who wish to avail of this option.

Budget, Sponsors and Support The EHC is responsible for building the budget and finding sponsors for the EHC Conference. However, NMOs applying to host the conference are invited to prepare and attach an indicative budget of: a) Venue; b) Accommodation rates and c) Travel costs on average from select European locations to the host (including visa fees if applicable). NMOs are also invited to include a list of possible sources of financial or in-kind assistance, for example from municipal authorities, host convention bureaus, etc.

Conference Webpage, Announcements, Logo, etc. The PCO will create material for a conference website that will include: a) Conference Programme; b) Registration Form; c) practical information (how to reach the conference venue by different means of transport, information about accommodation with a diverse price range, contact address for questions concerning registration, accommodation and visa issues, news, photos, maps, etc.), and any announcement and information that might be helpful for conference participants. The conference website will be linked to the EHC webpage and to other partners. It is important to promote the event and spread announcements about the conference as widely and early as possible.

The Host NMO will assist in providing the PCO with practical information for the website and in creating a logo and theme for the conference in conjunction with the COC. The Host NMO will arrange a site visit for the COC and PCO to the prospective conference venues.

Volunteers and Treatment Rooms The Host NMO will be responsible for recruiting ten volunteers to assist during the conference. Duties will include greeting delegates at the airport(s), assisting delegates during the meeting, handing out the roving microphones, and helping to man the registration desk. Only out-of-pocket expenses will be paid from the conference budget.

A Treatment Room will be open for the duration of the conference. Provision of replacement therapy for the treatment room shall be the responsibility of the EHC. The Host NMO should secure other treatment room materials as requested by the PCO, which will be reimbursed to the Host NMO from the conference budget. Medical volunteers from the host country should man the Treatment Room at no cost to the conference budget. More detailed requirements are available in a separate document.

Role and Responsibilities of the Host NMO The EHC NMOs at the Annual General Assembly will ultimately decide the conference venue of the EHC Annual Conference on the basis of a convincing application in terms of strength of the bid, probability of success, financial and practical viability and locality for hosting this event.

In order to ensure the success of the conference, it is important that the Host NMO works closely with the EHC Steering Committee and the designated PCO and shares and discusses all problems, issues and strategic decisions related to it. Page 4 of 7

For this purpose, the Host NMO shall appoint a Conference Organising Committee (COC) that will be responsible for carrying out all the tasks, which are the responsibility of the NMO in organising the conference. The President, VP Finance and CEO of the EHC are automatically members of this COC and shall represent the EHC on this committee. Day-to-day decisions relating to the conference organisation shall be made by the Chair of the COC and the President, CEO and VP Finance of the EHC working with the PCO.

The COC shall identify and appoint a ‘Programme Committee,’ which will be made up of four members designated by the EHC and four designated by the Host NMO. These individuals shall be selected on the basis of their scientific competence and ability to contribute to the development of a broadly appealing scientific programme.

The EHC, working with the designated PCO, shall agree and oversee the conference budget. Financial responsibility for the organisation of the conference shall rest with the EHC.

Role and Responsibilities of the EHC The EHC will supervise and provide support and assistance regarding all scientific aspects related to the conference, and will also support the Host NMO by suggesting invited speakers, discussing themes, and sharing experience from past conferences.

The EHC name and logo will appear on every announcement, poster, leaflet and the conference website.

Role and Responsibilities of the PCO The EHC will appoint a PCO who shall work as the professional conference organiser for the EHC Conferences on an annual basis. This consistency of approach should ensure an optimum outcome in relation to organisation and maximising financial income for the EHC and the Host NMO.

The PCO shall work with the COC in every aspect of organising and promoting the conference. The PCO shall liaise regularly with the EHC President, VP Finance and the Chairperson of the COC who shall represent the EHC and the COC respectively between meetings of the COC.

Meetings of the COC, which include the President or VP Finance or CEO of the EHC shall, in general, take place by conference call.

The PCO shall, with the input and guidance of the EHC, put together and distribute a sponsorship package for the conference and shall manage all sponsorship queries and bookings.

The PCO shall also participate in the review of all conference bids and prepare for the SC an indicative budget, check mobility access in the venue, check transportation access to the venue, including flight connections, and check average airfare. The resulting report will be shared with the SC to assist in the selection of the final two candidates and presented to the General Assembly prior to the NMOs’ vote.

Financial Outcome Final, unaudited accounts of the conference shall be available no later than 60 days after the conference. All pending financial transactions related to the conference should be concluded by the end of the financial year.

Any financial surplus shall be shared equally between the EHC and the Host NMO. Page 5 of 7

Planning Schedule - General WHAT WHEN HOW NOTES Submission of At least 24 months prior to Proposal must be sent to Early applications are applications for hosting the date of the event. the EHC Steering welcome the annual EHC Committee. Deliberation Conference with recommendations and suggestions will be sent out ASAP after the deliberation EHC selection and Applications will be vetted Decision announced at EHC decision by the EHC Steering Annual Conference – two Committee. The two best years prior to conference applications, in the opinion of the Steering Committee, shall go forward to the EHC General Assembly where the final decision shall be taken by the NMOs present and voting. Page 6 of 7

Application to Host ANNUAL EHC CONFERENCE Please return to EHC office at [email protected] & [email protected] by Monday, July 31, 2017. NMO: Location (City and Country): Contact Person: Postal Address: Email: Telephone: Fax:

Proposed dates 4-6 October 2019

Proposed members of the Conference Organising Committee (maximum 3)

Interest in organising the event: Can you give us a brief description of your interest in hosting the event, your capacity to host and organise the event and how it will benefit your organisation?

Proposed venue for the event

Distance from airport, train, etc.

Facilities available Please note that the annual conference attracts between 200-300 participants. A minimum of 1 plenary room, 1 parallel room, 1 treatment room, 1 speaker preview, and ample exhibition space is required. Provide the maximum capacity for each room available. Please also indicate reduced mobility access.

Organisational capacity of the NMO Number of active volunteers: Number of staff: Does the NMO have a permanent office: Estimated number of volunteers during conference: Number of staff available to man Treatment Room: What kind of additional support can you provide: Page 7 of 7

VAT Rules on Conference Registration Fees – in proposed Host Country Is VAT payable on Conference Registration Fees, if so, at what rate? Does the Conference need to register for VAT in your country? Further information:

Visa Requirements – in proposed Host Country Does the Host Country have diplomatic ties with all EHC member countries? If not, which ones? Do any EHC member countries require visas to enter the Host Country? If so, how many? If yes to the above, would the Host Country provide assistance in processing visas for the EHC Conference? Further information:

Accommodation: please indicate the accommodation and number of rooms available and average cost per room or range of room costs

Preliminary indicative budget Estimated Costs Meeting Room, Audio Visual & Simultaneous Translation Equipment Meals and Refreshments Conference Dinner Organising Committee Expenses Website & Print Items Other

Please, provide any other useful information:

I have read the Conference Guidelines, and am able, with the support of my NMO, to bid to host the EHC Annual Conference in the year ______.

Signed: President/Chairperson of NMO: Name (Print): Date: FOR EHC Office Use Date application received by EHC Office ______