Community Resources

Facebook Organization Pages

BostonSight

Sjogren’s Syndrome Foundation

Stevens Johnson Syndrome

Stevens Johnson Syndrome Foundation

National Keratoconus Foundation (NKCF)

Facebook Support Groups

Note- Closed groups are private so that posts can only be seen by members – click “ask to join group” in the top right hand corner of the page to join.

Graft Versus Host Disease Group - A closed support group with more than 80 members that include patients, friends and family. Daily posts. 

SJS Friends Group -  A closed support group with more than 300 members that include SJS survivors, friends and family. Daily posts.

Stevens Johnson Syndrome Awareness -  An open advocacy group with more than 850 members that include SJS survivors, friends and family. Weekly posts.

Keratoconus Group -  An open group with more than 2,500 members that include keratoconus patients, friends, family and medical providers. Daily posts.

Sjogren’s Syndrome -  A closed support group with more than 400 members that include patients, friends and family. Weekly posts.

Living with Sjogren’s Syndrome -  A closed support group with more than 800 members that include patients, family and friends. Weekly posts.

List-Servs (E-mail support groups)

GVHD: Support group for post-BMT patients- more than 375 members who posts bi-weekly. To subscribe, e-mail listserv@listserv.acor.org. Leave the subject line blank. Message body should say: "Subscribe GVHD"

KERATOCONUS: Support group for individuals with keratoconus. More than 500 members post daily. To subscribe, visit http://www.nkcf.org/kc-link/  

SJS/TENS Kids Support Group: Support group for children and young adults with SJS - more than 200 members who post weekly. To subscribe, email: sjskidssupport-subscribe@yahoogroups.com

SJS/TENS Kids Support Yahoo page

Dancing to Vintage Vinyl

Mark Fleck with the sculpture he made for BFS

    

In December of 2009 I had a flare-up which debilitated me to the point that I did not dare drive. Even the lights from the TV hurt so badly. The only thing I could do was lie on the couch with compresses on my eyes to ease some of the pain. I became so depressed that I was ready to take my own life.…read more

Patient removing PROSE device in mirror