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CICATRICIAL ALOPECIA RESEARCH FOUNDATION

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Nonprofit Overview

Causes: Health, Specifically Named Diseases Research

Mission: The Cicatricial Alopecia Research Foundation (C.A.R.F.) was formed as a result of one person’s experience with scarring alopecia (cicatricial means scarring). When the patient realized that little is known about such disorders, she decided, with the help of her doctor, to initiate a grass roots effort to raise funds to study these problems. C.A.R.F. began raising money with the following mission in mind: -to provide funds for research to find effective treatments and a cure -to support education and advocacy -to raise public awareness

Geographic areas served: All

Programs: Carf participates in professional conferences attended by the medical community and pharmaceutical firms to share information on the disease. Carf sponsors a biannual patient/doctor conference where the latest treatment and research findings are discussed. Carf patient support groups, which meet multiple times a year, provide many benefits that give patients the opportunity to express themselves in the safety of a group that understands their emotions, to share ideas and tips about cosmetic options, to learn more about cicatricial alopecia, and to no longer feel alone. A physician is present at all meetings to answer questions and make sure correct, up-to-date information is given.

carf funds research grants for promising medical and scientific research related to cicatricial alopecias.

carf supports website to provide information about the cicatricial alopecias for patients, their families and physicians, as well as the public. Carf provides a semi-annual newsletter including news of new medical findings and practical pointers for dealing with cicatricial alopecias.

Community Stories

1 Story from Volunteers, Donors & Supporters

1

Volunteer

Rating: 5

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.