A Peek at the European EWMnetwork
This is the first in a series of articles examining the work undertaken by patient organisations to help those affected by WM. Waldenstrom’s macroglobulinaemia (WM) is a rare, slow growing blood cancer. Approximately three in one million people are diagnosed with WM every year in the USA.
In Europe, approximately five in one million people are diagnosed with WM each year. WM is classified as an orphan disease, i.e., one so rare that funds for research and enough patients for clinical trials are scarce. Treatment options for WM are often based on research undertaken in other disorders.
The European Waldenström’s Macroglobulinemia network (EWMnetwork), is an alliance of non-Hodgkin lymphoma (NHL)/WM patient organizations in European countries that is not focussed on the individual patients with WM but rather on advocacy for WM in general in Europe. It is a not-for-profit organisation that was formed in the Netherlands in 2009. WM patient organisations from 10 different European countries are currently affiliated with the EWMnetwork.
“The purpose of the EWMnetwork is to provide patients with WM, via advocacy, a strong voice within relevant European political and healthcare organisations,” said Marlies Oom. Marlies is the secretary/treasurer of the EWMnetwork and has been with the organisation since it started in 2009.
The objectives of the organisation are to:
- Improve access to treatment, medication and reimbursement in all European countries;
- Improve access to information on clinical trials and research in all European countries;
- Facilitate the creation of WM patient support groups in each European country by means of a web page for each country.
“Our organisation achieves its advocacy objectives by being a member of, and working with, EURORDIS, ECPC and other appropriate healthcare organisations,” said Marlies.
EURORDIS (European Organisation for Rare Diseases) is an alliance of patient organisations that promotes research on rare diseases and the commercial development of orphan therapies. ECPC (European Cancer Patients Coalition) represents the interests of all cancer patient groups, from the more common to the rarer forms of cancer.
Keeping Affiliated Patient Organisations Connected
The EWMnetwork uses a number of ways to keep the affiliated patient organisations connected and engaged.
“Through the use of online activities, affiliated patient organisations can exchange information, best practices, etc., and communicate this to their national NHL/WM organisation,” she said.
Other methods for keeping affiliated patient organisations connected are newsletters and annual or biennial meetings with the affiliated national patient organisations.
Web Page for Every European Country
One of the recent developments by the organisation is the setting up of a web page for each European country at www.waldenstrom.info. These web pages can also be found on the organisation’s website at www.ewmnetwork.eu.
“The country page is aimed to help patients with WM and their families find other patients with WM in their own country so they can get in contact with them,” said Marlies.
A contact person receives a login to the country page and that person acts as a mediator in the process of starting a WM patient group in his or her country.
Benefits of Online Communities
The EWMnetwork also participates in RareConnect, a joint project of EURODIS and NORD (National Organization for Rare Disorders, USA). RareConnect provides online patient communities for those affected by a rare disease. At present, approximately 50 online communities are active on RareConnect of which WM is one.
Through RareConnect, each online community allows patients and their caregivers to exchange information and experiences as well as post articles. If requested, this information can also be translated into five languages (English, German, French, Spanish and Italian).
“The main issues members like to discuss are their experiences with symptoms, diagnosis, treatment and medications for their disease,” said Marlies.
International Workshop on WM
Since 2000, an international workshop aimed at health professionals has been held biennially to assist in the exchange of knowledge on all aspects of WM research and treatment. The last day of the workshop is directed towards patients; EWMnetwork supports this patient-doctor day. For more information about the forum, click here.
Challenges Facing Patients
The biggest challenges for patients with WM (and other very rare diseases) in Europe are access to needed therapies and reimbursement.
“There are therapies that have been proven to work in USA for WM but are not registered in Europe for WM due to the rarity of the disease. Registration is very costly and, for the pharmaceutical industry, not interesting as there are too few patients,” said Marlies.
Many thanks to Marlies and the EWMnetwork for their efforts in trying to help patients and their caregivers receive the information and care they need.
July 28, 2014