It’s simple … go the extra mile and you will stand out from the crowd.
Trials and Tribute: Ben's Friends Rare Diseases Community - February 2012 Monthly Newsletter
In this issue
Ben’s Friends & Rare Disease Day
Newest Communities
Featured Member of the Month
Ben’s Friends & Rare Disease Day
Rare Disease Day is February 29th (very soon!). We’re pleased to announce that we are now part of a large consortium of non-profits, foundations,…
Wonderful blog on Chiari by our friend Alicia - Chiari Life.
Alicia a tremendous advocate for Chiari Malformation Support and is a volunteer moderator. She helps make the network go and brings comfort and support to over 700 people (and growing!).
Trigeminal Neuralgia (TN) - Online Support Group
New member says:
“Thanks
so worn out from relentless attacks
can’t tell you how great it is to find some people that understand
hope all is well with you
kindest regards”
” The world of unusual illnesses and diseases has remained a mystery too long. Thanks for shedding some light and making those who deal with pain/sickness on a daily basis find a community that understands.” - Maria
Living With Erythromelalgia Support Group
New member says:
“Thanks for the welcome, I’ve been looking for an EM forum for some time … finally found this one!”
Living With Fibromyalgia - Online Support Group
New member says:
“Thank you for helping to make this site possible. I need to get into a support group badly as no one around here has FMS and it’s so difficult to get out of the house sometimes to go to the meetings over an hour away.”
Trials and Tribute: Patient Support Communities Powered by Bensfriends.org
These communities are a part of the Ben’s Friends network of patient communities. Learn more at bensfriends.org.
Patient Communities
Acute Disseminated Encephalomyelitis (ADEM)
ADHD/ADD
Adrenoleukodystrophy (ALD)
Arteriovenous Malformation (AVM)
Ataxia (International)
…
Living with Psoriatic Arthritis (PsA) - Online Support Group
New member says:
“Thanks for the warm welcome, although i am the only member from the middle east, yet i can see that PsA is treating us all the same :) “
Living with Psoriatic Arthritis (PsA) - Online Support Group
Trigeminal Neuralgia (TN) - Online Support Group
New member says:
“Thank you for the contact. I can see there are a lot of great people on this site, quite amazing really. I am looking forward to sharing any thing I have learned that may help any one else with this condition and also learning what every may help be in dealing with it. I want to THANK YOU and Ben for all of the work that went in to making this site possible and helping so many of us, past, present and future.”
Primary Sclerosing Cholangitis (PSC) - Online Support Group
New member says:
“Thanks! Hope to find parents with some experience on the disease and symptoms.”
Living with Psoriatic Arthritis (PsA) - Online Support Group
New member says:
“The kindness, compassion and good humor of the group has buoyed me up today while waiting to be accepted as a member. I very much look forward to getting to know you better. It’s kind of you to offer a personal welcome to a stranger. Thanks.”
Living with Psoriatic Arthritis (PsA) - Online Support Group
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