- Compassionate Care
- Schedule a Consultation
- Have an Appointment at BostonSight?
- BostonSight Web Portal
- Community Resources
- Support Organizations - General
- Support Organizations - Disease-Specific
- Facebook and Email Groups
- Financial Resources
- Local Travel & Lodging
- National Travel Resources
- National Lodging Resources
- Patient Stories
- Patient Letters
Facebook Organization Pages
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 firstname.lastname@example.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: email@example.com
SJS/TENS Kids Support Yahoo page
Dancing to Vintage Vinyl
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