My Nonprofit Reviews
M Ey
Review for CICATRICIAL ALOPECIA RESEARCH FOUNDATION, Los Angeles, CA, USA
When diagnosed with Cicatricial alopeia the carfintl.org website provided much needed information. When a CARF volunteer phoned me I no longer felt alone. I attend free support group meetings where patients, their loved ones and a doctor discuss all aspects of this very rare disease. The Patient-Doctor Conferences held every two years are attended by patients and experts from all over the world. Attendees retuen home happier, more emotionally balanced, better informed and with new friends. CARF uses money donated for patient support, research grants and providing current medical information and treatment . The free biannual newsletter is produced by volunteers. Because there are so few of us patients every dollar donated to CARF used to the max and is greatly appreciated. Dr. Vera Price is just one of the many doctors and patients who donate (through CARF) their time to help others. Imagine your scalp itching, burning as your hair continues to fall out only to learn your dermatologist doesn't have a clue how to help you. Imagine feeling like a freak and not knowing where to turn. Both doctors and patients can turn to CARF for help. I believe in this organization so much that I not only volunteer, but send a donation every year.
More Feedback
If I had to make changes to this organization, I would...
Since CARF relies on volunteers it is hard to start and maintain support groups. The problem is finding doctors (knowledgable about the disease) to commit to volunteering as support group advisors. The disease is so rare a doctor might see one cicatricial alopecia patient in his/her entire career.
Would you volunteer for this group again?
Definitely
For the time you spent, how much of an impact did you feel your work or activity had?
Life-changing
Did the organization use your time wisely?
Very Well
Would you recommend this group to a friend?
Definitely
When was your last experience with this nonprofit?
2013
