June is National Scleroderma Awareness Month
The Scleroderma Foundation is dedicated to improving the lives of those effected by scleroderma through support, education and research. The Foundation website is a wealth of valuable, in-depth resources about this complex illness.
- Research: They encourage advocates to contact members of the US House Labor-HHS- Education Subcommittee in support of bill FY08, providing a 6.7% increase for the National Institutes of Health (NIH). The Foundation is concerned about an "...erosion of the nation's medical research enterprise..."
- The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) (subdivision of NIH), provides most of the funding for scleroderma research, but advocates state this disease is given low priority
- The Scleroderma Foundation allots $1 million a year to research dedicated to finding the cause and cure of this complex autoimmune disease:
- Support: CarePages "Support & Community for Everyone Coping with Illness". I love this site! There are CarePages Moms, blogs (Stories of Inspiration) by people with various conditions. The only drawback is the site does not allow you to search by diagnosis or condition, so I can't search for the Scleroderma Community pages and provide a link for you...
- Education: If your computer supports Windows Media Player, you can view "Living Well with Scleroderma". There is a Get Connected Bulletin Board. There is a contact for the National Registry for Childhood Onset Scleroderma. The site provides links to camps for children with serious skin diseases.
- Health Professionals get their own section of the website where links to Continuing Education and CME opportunities are provided. FDA alerts are provided, such as the important FDA MEDWATCH ALERT reporting deaths connected with compounded Injectable Colchicine 0.5mg/ml, 4 ml vials lot number 20070122@26.
- One of my very favorite resources, dermatlas.org (Dermatology Image Atlas). As a clinician, you've just got to love it! Almost 10,000 images of skin problems to peruse. Just be patient while they download.
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