Annual Report

Dear members,
first of all we announce that Mr. Brian O’Mahony was elected at the General Assembly of 2011. Mr. Veldhuizen renounced also being further a member of the Steering Committee. For the welcome speech and biography of Mr. Brian O’Mahony and a farewell to Mr. Veldhuizen, see the Newsletter of October 2011 (2.2 MB).

At the General Assembly Mr. Jo Eerens presented the president’s report 2010 on behalf of the president. You find here the different points he mentioned and which were a part of his presentation. You can download the presentation here (846 KB).
After this presentation the Vice-President Finance presented the financial report that was approuved by the G.A. You can find the report at the page of financial report.

Activities EHC:

1. Round Table

2010 February: Ageing with haemophilia
2010 June: prophylaxis for adults
Since last GA 2010 November: patient safety and Haemophilia care
March 2011: patient engagement and empowerment
JUne 2011: Women and bleeding disorders
Upcoming: December 2011 “Supporting R&D in rare diseases: barriers and incentives”.

What are the outcomes of the Round Table:

To take a place on the platform of the EU-policy makers.
To build awareness amongst politicians and other stakeholders (like other patient organisations and organisation platforms) so that we can discuss problems, increase our knowledge of the complexity of the situations and look also for solutions.
Political decisions are not always the fastest. But made in a discussion and dialogue they are the most stable decisions. To be part of this decision making process is very important. So you need to build up influence.
You can’t predict if and where something will change. But it is certainly changing.

2. EU-Parliament Event:

Was not organised for the reason that the time was not appropriate.

3. Advocacy

Lisbon
Advocacy-kit, ordered by the EHC and redacted by EU-representation office
- We did a survey on the reception of the toolkit
- 7/43 answers of which 2 said they didn’t receive it. Some found it useful for media campaign and to help by funding campaign. Other used it as confirmation of the advocacy they already are doing.
Balkan round-table/workshop

Representation activities of the members of the board for the EHC

PLUS; PPUG; EURORDIS; PPTA; IPFA; ISTH; EHA; EMA; EUROPABIO; EUCERD

Office activities

In 2010 we agreeed the new office in Rue Grisar, but had to move out and had a new address since February 2011-02; sharing office with IPOPI.
In May 2010 EHC engaged a staff member to work part time and increased his working time in November 2010 to 4/5
Website: totally reviewed with the help of Uwe, Mrs. Krichkevitch and webmaster of German Haem. Society.
Bookkeeping, although it still has to be improved, we succeeded in keeping more accurate the book keeping. It resulted in the reimbursement of the VAT
The office took over the task of management of Round table
Newsletter:
Contact with sponsors and NMO’s

EU-representation office report of 2010 and 2011

2010

Events in 2010:

three Round tables with together more than 90 participants, high level of speakers, participation of NMO’s and EU-roganisations: UEMS, CPME, PGEU.
MEP’s involvement Irish MEP, Mrs. Nessa Childers; Italian MEP, Ms. Debora Serracchinani; Dutch MEP, Mr. Van de Camp

Initiatives in 2010:

Involvement in EUCERD
Contact with 6 EU-officials of DG Research, DG Health
EU-legislation: Updates on Annex 14 “Manufacture of medicinal products derived from human blood or plasma”; EMEA consultation to EMA Paediatric Committee (PDCO).
EU health conferences: May 2010 Rare disease in Poland; October 2010 EU health forum in Austria

2011

Events 2011:

Two Round tables and one still to be held, each time with a call to action

Initiatives in 2011

World Haemophilia Day: as a result of the RT on Patient engagement and empowerment: the advocacy toolkit
EUCERD ongoing representation
EU call for tender as a follow up of the EUHASS project
Contact programme with the EU officials planned in Q4
Newsletter update on EU-affairs
EU Health conference: 12-13 July Warsaw European Patient Forum

Activity plan 2011 and Strategic plan 2012-2014

These six points were proposed at the GA in 2010 as activity-plan:

1) We will have to work with a template for methodical report of each representing or activity of the EHC (is done and we finally put a sort of agenda, centralised by the EHC-office)

2) Optimise the external consultants We optimised the External consultants in this way: we work with three consultants: the eu-representation office: we diminished their tasks and gave some of theirs to Jo. We increased the cooperation with the book keeper and this resulted in the recuperation of the VAT and we set up the cooperation with a web-specialist, what resulted in an updated version of our website.

3) The RT are very important Indeed, they are. Getting on the scene of EU-organisations is very important. This resulted n the request of becoming a member of the EUCERD

4) We need to review the newsletter policy. This is done. Jo is collecting articles, and Uwe is reviser of the content. We also put a disclaimer into the newsletter, and the newsletter is published quite in time and 4 times a year.

5) We should consider organising a preconference workshop with MAG. This has to be reconsidered and perhaps will be something for next year.

6) The survey of 2009 is a success (published in Haemophilia) Should we repeat such a survey adding other questions. This hasn’t been done. It was also linked to the event at the EU-Parl. As this was cancelled, the project wasn’t finalised.

General remark to the Strategic plan 2012-2014

The 2012 -2014 strategic plan is in large part a continuation of the previous strategic plan. After careful evaluation the Steering Committee has determined that its missions and goals are correct but still there is work to be done. Therefore we want build up on the foundation we’ve laid in the previous plan. However we have identified one additional and important area which is addressing young-adults. This is included as a new plan and it will be developed in the coming year.