Eurordis Membership Meeting Copenhagen 2008: May 16 & 17. Would you like to have access to care that is adapted to your disease and that combines your medical and social needs? This year’s Annual Membership Meeting is the opportunity to learn more about centres of expertise and European reference networks and to understand how you can advocate to make the health system work for rare diseases today. We look forward to seeing you at the Eurordis Membership Meeting 2008 Copenhagen on 16 and 17 of May.
A new Contribution has just been released! Read Eurordis’ contribution to the European Commission’s Public Consultation on a "Legal proposal on Information to patients" (available in English only)
Rare Disease Day 2008 was a huge success! All across Europe and beyond, patient groups organised hundreds of awareness-raising events and were effective in creating an enormous buzz around the First European Rare Disease Day. The celebrations ended with the first Public Hearing on Rare Diseases at the European Parliament in Brussels. Many people from Europe and as far as Canada and Armenia joined us to make this a truly ‘rare day for very special people’. Next rendez-vous? February 28th, 2009!
Proposal for an EU Directive on Organ Donation and Transplantation: Renewed hope for rare disease patients A proposal for an EU Action Plan and Directive on Organ Donation and Transplantation is expected to come out at the end of 2008. This could mean renewed hope for a multitude of rare disease patients whose lives depend on organ transplants and who would benefit from improved availability, accessibility, quality and safety of donated organs. The time to act is now!
How much is a life worth? How Swedish patients fought to have access to a very expensive orphan drug 2007 has been a decisive year for people suffering from Hunter Syndrome in Sweden. After a year-long political battle, a rare disease patient group convinced the local public hospital and the government authorities that their children affected by a congenital enzyme deficiency have the right to enzyme replacement regardless of the cost. The creation of a national fund for orphan drugs is now under consideration in Sweden.
The courage to start a new life at 50 with a rare disease: Rosie Matthysen’s example Rare diseases strike at any age. Rosie Matthysen spent more than 40 years living the full life of a dynamic wife and caring mother of two boys. And then, slowly, her life spiralled out of her control: she was diagnosed with Pulmonary Hypertension.
Eurordis Summer School for Patient Advocates As part of Eurordis’ continued commitment to empowering people living with rare diseases and improving their quality of life, we are organising, for the first time, a ‘Eurordis Summer School’ for capacity building for patient representatives in aspects of clinical trials and drug development. The aim is to further the understanding of patient representatives on their role and potential input in the regulatory process of drug development and clinical trials in Europe. The Eurordis Summer School will be organised from 15-19 June, 2008 in Barcelona, Spain. Read more >
Eurordis is Seeking Corporate Partners Eurordis is seeking corporate companies within and outside the healthcare industry to build common actions and develop a partner relationship over the medium to long term. What we are looking for includes logistical and financial support, skills, time, as well as communication, fund-raising and translation support. If you are interested in becoming a partner of Eurordis, please contact eurordis@eurordis.org
Volunteer translators We are seeking volunteer translators to work from English into German, Portuguese, Italian, Spanish and French for communications to the rare disease community in Europe. If you would be interested in joining our network of volunteer translators, please contact translators@eurordis.org
