Join us in celebrating the 10 Anniversary of the Living with ADEM community as well as in spreading awareness about Mast Cell Diseases. This month, we also published a blog with links to the doctor and hospital recommendations in each of the communities.
1. Happy 10th Anniversary, Living with ADEM Community!!
Founded on October 13, 2011, our Living with ADEM Community has now been helping patients and their families for ten years!!
2. October 20 is International Mastocytosis & Mast Cell Diseases Awareness Day
This month we’re helping raise awareness about Mast Cell Diseases so that people affected by a mast cell disease can have greater chances of getting an early diagnosis and receiving appropriate treatment
3. You might find a specialist for your rare disease in our Recommend a Doctor pages
Many patients benefit from the doctor and clinic information they find in our communities. We thought of compiling them in a blog so that even more people could get proper care and treatment.
4. Leadership team’s ongoing projects
Below are the projects our leadership team is currently working on:
Revising our users agreement and privacy statement.
Updating our members about what sets us apart from social media and why Ben’s Friends gives utmost importance to their privacy.
Expanding our caregivers site and inviting family members and friends to participate from each community.
Following a successful beta test of our patient directed registry, Ben’s Friends Patient Registry, is being prepared to be rolled out to our first communities.