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.
Clearly, two key 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.
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.
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”.
Membership Meeting workshops Program
Register for the conference