EWMnetwork partners in Europe:
EWMnetwork is a full member of the European Cancer Patient Coalition ( ECPC).
Established in 2003, The European Cancer Patient Coalition is the voice of the European cancer patient community, uniquely representing the interests of all cancer patient groups from the major to the rarer cancers. It has been established to represent the views of cancer patients in the European healthcare debate and to provide a forum for European cancer patients to exchange information and share best practice experiences.
EWMnetwork is an associate member of the European Organisation for rare diseases (EURORDIS).
The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases. Eurordis’ mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and - directly or indirectly - to fight against the impact of rare diseases on their lives.
EMA is the official European Union’s body for evaluation and supervision of medicines. EMA has a wealth of information to share with patients and consumers about the latest developments in this field.
EWMnetwork partners outside Europe:
The US based WM patient organisation IWMF (International Waldenström's Macroglobulinemia Foundation) has members all over the world. IWMF offers individual WM patients a lot of information. The IWMF website gives information in four languages: English, Spanish, French and German. Co-operation between EWMnetwork and IWMF is self-evident.
Possible topics for co-operation between EWMnetwork and IWMF are e.g.:
- exchange of information about research outcome and trials
- exchange of information about patient support
- discuss ways of translation of materials
- discuss combined research possibilities (European/US)
Bing Centre www.BingCenterforWM.org
The Waldenström’s Macroglobulinemia program at Dana Farber Cancer Institute (DFCI) was founded in 1999 by Dr. Steve Treon with the help of patients, caregivers and DFCI scientists in an effort to advance our understanding of the cause of WM, and to pursue novel therapies. In 2005, the WM program was officially designated as the Bing Center for WM, in honor of Peter S. Bing M.D., former Chair and current Trustee of Stanford University. The Bing Center for WM attracts hundreds of patients each year from all over the world, and is the largest referral center for this disease. The WM clinic is involved in numerous intra- and extramural collaborative studies into the natural history, morbidity, genetic predisposition, and treatment of WM, and has served to extend training in this uncommon disease to medical students, residents, physicians, and allied health care givers. Each year, several internationally recognized WM experts are invited to participate as visiting professors.
An important complement to the basic research efforts into WM has been the conduct of clinical trials solely dedicated to WM patients.
NB Because WM is such a rare disease, clinical trials in Europe solely dedicated to WM patients are only possible when different European countries work together.