Umbrella Organization of European Waldenström patient supportgroups and patients

European
WALDENSTRÖM'S
MACROGLOBULINEMIA
network

Social media

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 National Organization for Rare Disorders NORD. The communities are garanteed 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.

The RareConnect website is split into three sections: What, Meet, and Learn.
The What section features patient
stories and blog style updates from patients and patient organization representatives.
The Meet section is a forum, moderated by volunteers and offering human translation services across 5 languages: English, French, Spanish, Italian, and German. Since patients and families are spread thinly across the globe, it is vital to create a space where information can be shared with the best possible translation.
Finally, the Learn section is a resource of information in the form of frequently asked questions, documents, recently publish news and scientific articles, upcoming events, and patient organization's contact information.

Users interested in discussing their disease register on the website. 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.

The project is financed by European Commission, the French Telethon (AFM) and the French Federation of Pharmaceuticals (LEEM) and a diverse array of corporate partners who play no role in the operation of these communities.
Any questions on the Rare Disease Communities project can be addressed to Rob Pleticha, the Online Patient Communities Coordinator at Eurordis at: robert.pleticha@eurordis.org. ”

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

For IWMF talklist: www.iwmf.com/services/iwmf-talk.aspx

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
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