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:
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:
Living With Von Willebrand Disease - VWD by Bens Friends
Living With Von Willebrand Disease - VWD by Bens Friends. 1 talking about this. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic…
Traumatic Brain Injury Support by Bens Friends
Traumatic Brain Injury Support by Bens Friends. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized as a…
Synovial Sarcoma Survivors by Bens Friends
Synovial Sarcoma Survivors by Bens Friends. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized as a 501©(3)…
Sjogrens Syndrome Support by Bens Friends
Sjogrens Syndrome Support by Bens Friends. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized as a 501©(3)…
Addison’s Disease Support Community
Addison’s Disease Support Community. 1,362 likes · 4 talking about this. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic…
Living With Ulcerative Colitis
Living With Ulcerative Colitis. 1,014 likes · 4 talking about this. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition…
Nephrotic Syndrome Support
Nephrotic Syndrome Support. 1.3K likes. Welcome to Nephrotic Syndrome Support, one of many patient communities powered by http://www.BensFriends.org/.
Myasthenia Gravis Support Community
Myasthenia Gravis Support Community. 169 likes · 3 talking about this. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic…
Mast Cell Disorder Support
Mast Cell Disorder Support. 3K likes. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized as a 501©(3)…
Mast Cell Disorder Support
Mast Cell Disorder Support. 3K likes. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized as a 501©(3)…
Life with Fabry Online Support Group
Life with Fabry Online Support Group. 405 likes · 5 talking about this. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic…
Crohn’s Disease Support Community
Crohn’s Disease Support Community. 7,690 likes · 27 talking about this. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic…
Primary Sclerosing Cholangitis - PSC Support Group by Bens Friends
Primary Sclerosing Cholangitis - PSC Support Group by Bens Friends. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition…
Living With Polyneuropathy by Bens Friends
Living With Polyneuropathy by Bens Friends. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized as a 501©(3)…
Living with OPMD by Bens Friends
Living with OPMD by Bens Friends. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized as a 501©(3) non-profit,…
Living With Narcolepsy by Bens Friends
Living With Narcolepsy by Bens Friends. 1 talking about this. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition…
Myositis Support Group by Bens Friends
Myositis Support Group by Bens Friends. 1 talking about this. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition…
Friends and Family Affected by Myeloma by Bens Friends
Friends and Family Affected by Myeloma by Bens Friends. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized as…
Mast Cell Disorder Support Network by Bens Friends
Mast Cell Disorder Support Network by Bens Friends. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized as a…
Lyme Disease Support Network by Bens Friends
Lyme Disease Support Network by Bens Friends. 1 talking about this. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition…
Living With Graves Disease - A Bens friends Patient Community
Living With Graves Disease - A Bens friends Patient Community. 1 talking about this. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or…
Living With Facial Pain Online Support by Bens Friends
Living With Facial Pain Online Support by Bens Friends. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized as…
Living With Erythromelalgia - Online Support Group By Bens Friends
Living With Erythromelalgia - Online Support Group By Bens Friends. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition…
Living With Eagle Syndrome by Bens Friends
Living With Eagle Syndrome by Bens Friends. 1 talking about this. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition…
Ehlers-Danlos Syndrome Online Support Group by Bens Friends
Ehlers-Danlos Syndrome Online Support Group by Bens Friends. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition…
Chiari Online Support Group by Bens Friends
Chiari Online Support Group by Bens Friends. 1 like · 2 talking about this. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic…
Brain Aneurysm Support Community by Bens Friends
Brain Aneurysm Support Community by Bens Friends. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized as a…
AVM Survivors Network by Bens Friends
AVM Survivors Network by Bens Friends. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized as a 501©(3)…
Atrial Septal Defect - ASD Support by Bens Friends
Atrial Septal Defect - ASD Support by Bens Friends. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized as a…
Living With Ataxia by Bens Friends
Living With Ataxia by Bens Friends. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized as a 501©(3)…
Amyloidosis Support Network by Bens Friends
Amyloidosis Support Network by Bens Friends. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized as a 501©(3)…
Adrenoleukodystrophy - ALD Support Group by Bens Friends
Adrenoleukodystrophy - ALD Support Group by Bens Friends. 2 likes. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition…
Life With ADD &ADHD by Bens Friends
Life With ADD &ADHD by Bens Friends. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized as a 501©(3)…
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Acute Disseminated Encephalomyelitis - ADEM Survivors Network
Acute Disseminated Encephalomyelitis - ADEM Survivors Network. 1 like. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic…
Living With Fibromyalgia by Bens Friends
Living With Fibromyalgia by Bens Friends. 1 like. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized as a…
Life With Lupus - by Bens Friends
Life With Lupus - by Bens Friends. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized as a 501©(3)…
Living With Psoriatic Arthritis by Bens Friends
Living With Psoriatic Arthritis by Bens Friends. 14 likes. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized…
Ben’s Friends Patient Communities
Ben’s Friends Patient Communities, Austin, Texas. 3,192 likes · 13 talking about this · 1 was here. Our mission is to ensure that patients living with rare diseases or chronic illnesses have a safe…
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