Umbrella Organization of European Waldenström patient supportgroups and patients


EWMn partners in advocacy

To be effective in advocacy as a European patient organisation, representing a very rare disease, we look for partnerships and collaboration with
1. relevant European and international patient- and hematological organisations
2. Waldenström- and Lymphoma patient organisations in European countries.

EWMnetwork is a member or partner of the following organizations:
  • - Eurordis
  • - Eurordis-CEF
  • - RareConnect, WM online community
  • - ECPC
  • - ECWM
  • - EHA-Patient Advocacy Group
  • - IWMF
  • - Lymphoma Coalition Europe

Eurordis, European Organization for Rare Diseases, is an alliance of patient organizations which promotes research on Rare Diseases (RD) and commercial development of orphan drugs. There are around 30 million people living with RD in Europe alone. Eurordis represents around 500 RD patient organizations in 50 countries (24 are EU Member States), covering more than 1.200 of the estimated 6000 Rare Diseases.

EWMnetwork is one of the nearly 50 members of the Council of European Rare Diseases Federations (CEF), which offers ways to collaborate and to train representatives of patient organizations, who are interested to play an active role in e.g. European patient organizations, clinical trials or the European Medical Agency, EMA.
EURORDIS Summer School and e-learning tools are just two examples of the various ways.

The WM online community is one of a growing number of other RD patient communities, that have their own online information and discussion, on request translated into 5 European languages.

ECPC, European Cancer Patients Organization, represents the interests of all cancer patient groups, from the more common to the rare cancers. It supports patient organizations in their activities, through the sharing of best practice and represents their interests in the European
healthcare debate. ECPC has more than 300 cancer patient organizations in 44 countries as a member.

The European Consortium for WM has the aim of combining the expertise of clinicians, pathologists and researchers accross Europe in order to develop novel strategies for diagnosis, assessment and treatment of patients with WM.

EHA-Patient Advocacy Group
For a number of years patient organizations have organized a Patient Advocacy Session at EHA Annual Congress. In addition, EHA and patient organizations work together to advocate issues of common interest, such as personalized medicine or the regulations for clinical trials.

The International Waldenstrom’s Macroglobulinemia Foundation (IWMF)
The IWMF was established in 1998 as a non-profi­t foundation to support WM patients and caregivers, and to promote and support research leading to better treatments and ultimately, a cure for WM  With a worldwide membership of over 8000, Support Groups and Affiliates in virtually every continent, the IWMF has proven to be a great help and a rich source of information to WM patients. Since 1999,  the IWMF has awarded over US$ 12 million for research on WM.

Lymphoma Coalition Europe is part of the global network of worldwide not-for-profit lymphoma patient organizations.

This is a website under permanent construction made by WM patients for WM patients.We will add new information in due time.
Disclaimer : By your use of the EWMnetwork for information and communication you relieve EWMnetwork of any responsibility
for the content of this website. Links to third-party sites appearing on this website are supplied for information only and EWMnetwork
cannot be held liable for the content or management of any such sites.