Your Team has been HARD at work and through the support of our generous donors we are able to bring some new communities on line. Our hope is through 2018 we will be able to bring on at least 2 new communities per month to support the Rare Disease Community. Please check out the New Communities. Some may even apply to you as several are co-conditions of the disease already represented on our Communities:
Living With Addisons - http://www.livingwithaddisons.org/
Caregivers Support Community - http://www.caregiversupportcommunity.org/
Life With Crohns & Colitis - http://www.lifewithcrohnscolitis.org/
Living With Fabry - http://www.livingwithfabry.org/
Living With Graves Disease - http://www.livingwithgravesdisease.org/
Living With Mast Cell - http://www.livingwithmastcell.org/
Living With Myasthenia Gravis - http://www.livingwithmyastheniagravis.org/
One we have put a lot of work into and will apply to many of our members is Life With Central Pain Syndrome This community includes a number of central pain and chronic pain conditions including:
- Central Pain Syndrome
- Allodynia
- Complex Regional pain syndrome (CRPS)
- Reflex Sympathetic Dystrophy (RSD)
- Hyperalgesia
Find it at:
http://www.lifewithcentralpainsyndrome.org/
You will find several of these communities have a new Landing Page. This page is designed to bring MORE information to not only our members but to Internet surfers as well. The other reason is so that we can finally have an integrated Chat for all of our patient communities. As this is an expensive process to do as well as maintain, we will be adding this new feature to our “Chat Intensive” communities first and as funds become available the rest.
One other addition is we now have a FB page for each of our communities. This is solely to direct those searching for support in FB to our regular communities. I would ask a small favor if you could go to the FB page for your community(s) or as many as you have time for and “LIKE” it. You don’t need to follow it so it won’t clog up your feed. What this will accomplish is as soon as we get 25 likes we get a hash tag and entered into the “search Function” allowing folks in need to find us and provide more help not to mention more support for YOU as our communities Grow:
https://www.facebook.com/Traumatic-Brain-Injury-Support-by-Bens-Friends-138372276950368/?ref=bookmarks
https://www.facebook.com/Synovial-Sarcoma-Survivors-by-Bens-Friends-192899667930866/?ref=bookmarks
https://www.facebook.com/Sjogrens-Syndrome-Support-by-Bens-Friends-198960397318505/?ref=bookmarks
https://www.facebook.com/Addisonssupport/?ref=bookmarks
https://www.facebook.com/LivingWithUlcerativeColitis/?ref=bookmarks
https://www.facebook.com/Nephrotic-Syndrome-Support-458268917579465/?ref=bookmarks
https://www.facebook.com/MyastheniaGravisSupportCommunity/?ref=bookmarks
https://www.facebook.com/MastCellDisorderSupport/?ref=bookmarks
https://www.facebook.com/MastCellDisorderSupport/?ref=bookmarks
https://www.facebook.com/Life-with-Fabry-Online-Support-Group-317666254947669/?ref=bookmarks
https://www.facebook.com/CrohnsDiseaseSupportCommunity/?ref=bookmarks
https://www.facebook.com/Primary-Sclerosing-Cholangitis-PSC-Support-Group-by-Bens-Friends-385400395234976/?ref=bookmarks
https://www.facebook.com/Living-With-Polyneuropathy-by-Bens-Friends-452893968446455/?ref=bookmarks
https://www.facebook.com/Living-with-OPMD-by-Bens-Friends-145474552898416/?ref=bookmarks
https://www.facebook.com/Living-With-Narcolepsy-by-Bens-Friends-141818369856773/?ref=bookmarks
https://www.facebook.com/Myositis-Support-Group-by-Bens-Friends-362182884253401/?ref=bookmarks
https://www.facebook.com/Friends-and-Family-Affected-by-Myeloma-by-Bens-Friends-560788564259655/?ref=bookmarks
https://www.facebook.com/Mast-Cell-Disorder-Support-Network-by-Bens-Friends-365518180586534/?ref=bookmarks
https://www.facebook.com/Lyme-Disease-Support-Network-by-Bens-Friends-142230099812233/?ref=bookmarks
https://www.facebook.com/Living-With-Graves-Disease-A-Bens-friends-Patient-Community-159845327968233/?ref=bookmarks
https://www.facebook.com/Living-With-Facial-Pain-Online-Support-by-Bens-Friends-136789663676933/?ref=bookmarks
https://www.facebook.com/Living-With-Erythromelalgia-Online-Support-Group-By-Bens-Friends-2012342079010668/?ref=bookmarks
https://www.facebook.com/Living-With-Eagle-Syndrome-by-Bens-Friends-1864226757004340/?ref=bookmarks
https://www.facebook.com/Ehlers-Danlos-Syndrome-Online-Support-Group-by-Bens-Friends-169822270417859/?ref=bookmarks
https://www.facebook.com/Chiari-Online-Support-Group-by-Bens-Friends-555441551491266/?ref=bookmarks
https://www.facebook.com/Brain-Aneurysm-Support-Community-by-Bens-Friends-159770054651242/?ref=bookmarks
https://www.facebook.com/AVM-Survivors-Network-by-Bens-Friends-1407352672721613/?ref=bookmarks
https://www.facebook.com/Atrial-Septal-Defect-ASD-Support-by-Bens-Friends-552901865058180/?ref=bookmarks
https://www.facebook.com/Living-With-Ataxia-by-Bens-Friends-1752667091444928/?ref=bookmarks
https://www.facebook.com/AmyloidosisSupportNetwork/?ref=bookmarks
https://www.facebook.com/Adrenoleukodystrophy-ALD-Support-Group-by-Bens-Friends-718386588346389/?ref=bookmarks
https://www.facebook.com/Life-With-ADD-ADHD-by-Bens-Friends-912530472232442/?ref=bookmarks
https://www.facebook.com/Living-With-Addisons-by-Bens-Friends-316595335500390/?ref=bookmarks
https://www.facebook.com/Acute-Disseminated-Encephalomyelitis-ADEM-Survivors-Network-378380842583881/?ref=bookmarks
https://www.facebook.com/Living-With-Fibromyalgia-by-Bens-Friends-384134748715445/?ref=bookmarks
https://www.facebook.com/Life-With-Lupus-by-Bens-Friends-421655424918294/?ref=bookmarks
https://www.facebook.com/Living-With-Psoriatic-Arthritis-by-Bens-Friends-288949321582679/?ref=bookmarks
https://www.facebook.com/bensfriendsorg/?ref=bookmarks
Sorry for this Missive but figured it was easier on all of you to lump it all together as opposed to spreading it out over several posts
Thanks for all of you,
TJ