Umbrella Organization of European Waldenström patient supportgroups and patients

European
WALDENSTRÖM'S
MACROGLOBULINEMIA
network

Social media

RareConnect
RareConnect Waldenström is an online social network in five languages:
www.rareconnect.org./en/community/waldenstrom-macroglobulinemia

The online Waldenström community is part of the "Rare Disease  Communities" project, started by the European Organization for Rare Disease EURORDIS ( www.eurordis.org) and the (American) National Organization for Rare Disorders NORD. The communities are guaranteed by Eurordis and Nord with a view towards fostering international collaboration amongst patient groups and protecting the voice of patients from purely commercial interests. Patient organizations play a key role in governing and communicating to the community, recruiting forum moderators, and being sources of information to patients and their families.

Patients looking for contact with other patients or looking for knowledge from professionals register on the website. By registering, information can only be seen by other people who have registered. After registering, users can upload their story on living with the disease through a link in their profile page. The story then automatically is added to the What section and is translated into all of the platform's languages.
Users can also participate in Forum discussions or post their own questions. If users see a message on the Forum that is not in their language (French, German, Italian, Spanish, or English), they request a translation be made. Within a few hours, the message is translated and uploaded automatically to the website. The user that requested the translation is also sent an email with the translated content.


Moderators wanted
We call upon volunteers ( English, French, German, Italian or Spanish speaking) to help to expand the online RareConnect WM community.  If you are interested to become active as a moderator in the online RareConnect WM social network, please contact secretary@ewmnetwork.eu


IWMF Connect
The IWMF provides a website for the WM community. IWMFConnect is a friendly Internet-based group discussion forum, where you can communicate with others, share experiences and insights, exchange information and get emotional support.
The discussions typically focus on WM diagnosis, treatments, research, prognosis, side effects and related conditions. In addition, other important information is conveyed about patient advocacy, outreach to doctors, concerns of the newly diagnosed, information about IWMF’s research and educational activities.
You can find IWMF through this link: https://groups.io/g/iwmfconnect
Facebook
There are several Facebook groups to be found where patients can connect with each other. The largest group is the ‘Waldenstrom's Macroglobulinemia’ group with almost 3000 members (from all over the world). Several European countries also have their Facebook WM communities. You can find the link to the Facebook sites on the country websites on www.waldenstrom.info.
 

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.