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| NAAF (National Alopecia Areata Foundation) |
The National Alopecia Areata Foundation was founded in 1981 when a young Californian with the disease looked for others to share and understand her problems. It has grown into the world center of alopecia areata information, research, and service. Located in San Rafael, California, the Foundation is governed by a volunteer Board of Directors and has a professional Chief Executive Officer and staff. The Foundation is represented in Washington, D.C., and the Chief Executive Officer and others have testified before Congressional Committees.
The mission of the National Alopecia Areata Foundation (NAAF) is to support research to find a cure or acceptable treatment for alopecia areata, to support those with the disease, and to educate the public about alopecia areata.
The mission is accomplished by:
• Funding research and research workshops that add to the scientific knowledge about alopecia areata, its causes, and different treatments
• Providing local support and education for people with alopecia areata and their families
• Informing the public about alopecia areata
• Advocating the concerns of people affected by alopecia areata
• Creating and distributing educational materials to health professionals as well as those affected, so that all may better understand alopecia areata
What does the National Alopecia Areata Fundation do:
• Raises funds and awards research grants to study the cause of alopecia areata, to develop effective treatments, and to seek a cure.
• Provides emotional support through personal contact and written materials to help those with alopecia areata and their families.
• Acts as the international center for alopecia areata information.
• Co-sponsors International Research Workshops on alopecia areata with the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) of the National Institutes of Health (NIH).
• Conducts ongoing public awareness programs and nationwide campaigns to educate about alopecia areata.
• Organizes an annual patient conference.
• Educates State and Federal officials on the need for fair insurance laws and greater government-sponsored medical research.
• Provides brochures for doctors to give to their patients.
Alopecia areata is not medically disabling; persons with alopecia areata are usually in excellent health. But emotionally, this disease can be challenging, especially for those with extensive hair loss. One of the purposes of the National Alopecia Areata Foundation is to reach out to individuals and families with alopecia areata and help them live full, productive lives.
There are thousands of successful, well-adjusted, contented people living with this disease. The emotional pain of alopecia areata can be overcome with one's own inner resources, sound medical facts, and the support of others. Sometimes professional counseling from a psychiatrist, psychologist, or social worker is needed to develop one's self-confidence and positive self-image.
Current research suggests that something triggers the immune system to suppress the hair follicle. It isn't known what this trigger is, and whether it comes from outside the body like a virus, or from inside. Recent research indicates that some persons have genetic markers that increase both their susceptibility to develop alopecia areata, as well as the degree of disease severity.
There is extensive worldwide research focusing on the cause and treatment of all forms of alopecia areata. The National Alopecia Areata Foundation is leading this research effort by raising private funds and awarding grants to university centers in the United States, Canada, and Europe, and by working closely with the government to increase Federal funding for alopecia areata research. So far NAAF has awarded over two million dollars to fund research at numerous institutes throughout the world.
Every four years, the NAAF cosponsors an International Research Workshop on Alopecia Areata at the campus of the National Institutes of Health. The workshops bring together investigators for an open exchange of knowledge to guide further alopecia areata research. Many new collaborative efforts follow each workshop. The first workshop took place in 1990, the second in 1994, and the third in 1998.
Kids having fun at NAAF conference in Los Angles, CA 2004
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Once a year, the Foundation organizes a weekend summer conference for people with alopecia areata and their families. Doctors, researchers, and exhibitors attend to hear and present the latest developments in research, treatment, support, and cosmetology. At the NAAF Conference, people from all over the world find a new family of support to help them cope with alopecia areata in their daily lives. These NAAF Conferences have grown every year and have added impetus to the Foundation's work and public awareness of alopecia areata.
The Foundation sponsors volunteer support groups all over the world as well as telephone support contacts. These groups offer people with alopecia areata a chance to share feelings, experiences, and solutions to coping with the disease. Each group has a leader who has alopecia areata or is closely associated with someone who does. Support groups further the Foundation's goal of research, emotional support, and public awareness.
Support leader for the region of Adriatic is Spela Seme, PhD from Kranj, Slovenia.
You can get more information about Alopecaia Areata and NAAF on following internet site - http://www.naaf.org
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