EURORDIS Membership Meeting
The next EURORDIS Membership Meeting (EMM) takes place on 23 May 2012 in Brussels in conjunction with the European Conference on Rare Diseases and Orphan Products (ECRD Brussels 2012) at the Management Centre Europe (MCE) Conference Centre. This year, the EMM includes the general assembly, forums and capacity building workshops. The general assembly is restricted to EURORDIS members. The workshops and forums are open to all interested stakeholders, in particular patient representatives (EURORDIS members and non-members) without additional registration fee.
There will be six parallel forums in the morning. The first session entitled “Learning from Each Other” will include areas of interest to patient organisations where exchanging information would be of particular value to them.
Clearly, two such topics are fundraising and advocacy. At the Fundraising forum, patient organisations with successful experience in this field, such as Fighting Blindness and AKU Society, will share their methods and discuss what has worked for them. Participants will have the opportunity to ask questions and share their own experience. The exchanges will be moderated by Jill Bonjean, Director of Communications and Development at EURORDIS, who has a valuable track record of fundraising for NGOs.
The Advocacy forum will be the place to learn from advocacy actions that have been carried out by EURORDIS and other patient groups to obtain access to particular drugs and treatments, with examples from PKU Sweden and Myeloma patients’ fight for Thalidomide, amongst others.
At each forum, several patient representatives will be invited to share their experience. At the forum on European Federations, for example, representatives from well-established European Federations, such as Osteogenesis Imperfecta Federation Europe (OIFE) and European Congenital Heart Disease Organisation (ECHDO), will explain how they started their networks and share the lessons they learnt along the way. This will also be the opportunity to present Rare!Together, a project managed by EURORDIS that helps rare disease patient groups set up their own European federations with practical advice from others in the patient community.
The fourth forum will tackle new issues raised by Rare Diseases and Aging. Patient representatives of diseases, such as Haemophilia and Myasthenia Gravis, will share ideas on how to deal with this phenomenon, which requires different support mechanisms from patient organisations.
The final two forums will provide attendees with a chance to learn from other patient representatives who are also EURORDIS volunteers and have important positions in the orphan drug regulatory system and in EU policy-making.
Michele Lipucci, Tsveta Shyns and Birthe Holme who have sat on the Committee of Advanced Therapies, Paediatric Committee and the Committee for Orphan Medicinal Products at the European Medicines Agency for several years, will share their experience of defending the interests of rare disease patients through the development of rare disease therapies. They will explain the importance of patient involvement in these activities. The session moderated by Maria Mavris, Drug Development Director at EURORDIS, will explain training opportunities at EURORDIS in this area.
Christel Nourissier, Secretary General of EURORDIS and member of the EU Committee of Experts on Rare Diseases (EUCERD), will be joined by others from amongst the eight patient representatives sitting on the Committee, to share with the audience their experience at the heart of EU policy-making. If you would like to know more about the work that is being done by EUCERD and the European Commission in the field of rare diseases, on centres of expertise, registries, national plans, access to orphan drugs, social policies and how patients can get involved, this is the workshop to go to!
The afternoon of this busy day will be devoted to capacity building workshops on topics related to priority themes in the EU Council Recommendation and National Plans on Rare Diseases, continuing the patient advocates’ empowerment begun in Athens and continued last year in Amsterdam. The presentations and discussions at these workshops will seek to answer questions such as: What role can your organisation play to implement the EU Directive on Cross Border Healthcare in your country? How can patients participate in the evaluation of Centres of Expertise? How can patients participate in national and international initiatives to promote rare disease registries and biobanks? How to advocate for strong governance and adequate funding of your national plan?
As in previous years, attendees thinking about launching their own online patient community will be especially interested in the Online Communities Workshop moderated by EURORDIS Senior Web Communications Manager, Denis Costello, who has been the driving force behind Rare Connect and has extensive experience in this field.
“The Membership Meeting is complementary to the European Conference,” says Anja Helm, Senior Manager of Relations with Patient Organisations. “It is the opportunity for patient representatives to learn from each other and understand important topics for patients in smaller groups and in a more familiar environment”.
Register for the conference
Membership Meeting workshops
This article was first published in the March 2012 issue of the EURORDIS newsletter
Author: Paloma Tejada
Photo credits: © EURORDIS