The Porphyrias Consortium includes six of the leading porphyria centers in the United States, as well as three Satellite sites, that provide expertise and experience in the diagnosis and treatment of patients with porphyria. The staff in each center includes porphyria physicians, researchers, research coordinators, and technical/laboratory staff. Together with the American Porphyria Foundation, the Porphyrias Consortium enables a large scale collaborative effort to develop new strategies and methods for diagnosis, treatment, and prevention of illness and disability resulting from these rare disorders. The consortium website is a forum for disseminating information to porphyria patients and their families, healthcare professionals, and other interested parties. The website also provides a list of currently active studies, with a description of each study and contact information for those who are interested. Of particular importance is the Longitudinal Study with the objective of characterizing the long term course and outcomes of each porphyria. Clinical trials are being conducted to establish the safety and efficacy of new therapies leading to approval by the US Food and Drug Administration. Partial support for the Porphyrias Consortium is provided by a grant from the National Institutes of Health as part of the Rare Diseases Clinical Research Network.
Camp Sundown is a camp that was created for kids with photosensitive conditions. It is held each summer. See www.xps.org for more information and for registration information.
Camp Discovery provides a week-long summer camping experience of fishing, boating, swimming, water skiing, arts and crafts, and just plain fun for young people with skin disorders. It is sponsored by the American Academy of Dermatology. Full scholarships, including transportation, are provided by the American Academy of Dermatology through generous donations of their members and other organizations. Members of the Academy are asked to recommend candidates for Camp Discovery, so ask your child's doctor about sending your child to Camp Discovery. https://www.aad.org/public/kids/camp-discovery
Planning a trip to Disneyland? Go to "Town Hall" and explain your condition with photosensitivity. You should bring a physician's letter with you as well as an APF brochure explaining the type of Porphyria you have. The staff will ask you some questions about your limitations (e.g., whether or not you can climb stairs) and how many are in your group. Next time you return, be sure to bring the old card with you, as it will only take about half as long to go through the process on your next trip. https://disneyland.disney.go.com/guest-services/info-center-guest-relations/
Planning a trip to Disney World? Proceed to the "Guest Relations" office at any park (Magic Kingdom, EPCOT, etc.) and request the Special Assistance Pass. Remember to bring a doctor's note and explanation of your condition, because it is not necessarily visible. People on duty may not be familiar with light sensitivity and its consequences. https://disneyworld.disney.go.com/guest-services/guest-relations/
There are many companies that offer sun protective clothing for both youth and adults. Please see Tips and Tricks for great ideas. Coolibar and Sun Precautions are companies to visit for clothing options.
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