Help rare disease porphyria sufferers!
Fr100 raised
1 contributor
4 Years running
Sun causes intense pain and drugs can be life-threatening to people suffering from porphyria, a group of rare genetic disorders that lead to debilitating metabolic defects. Affected individuals are faced with many restrictions in their daily lives, ...
Sun causes intense pain and drugs can be life-threatening to people suffering from porphyria, a group of rare genetic disorders that lead to debilitating metabolic defects. Affected individuals are faced with many restrictions in their daily lives, are often correctly diagnosed only late in their lives and subjected to inappropriate medical treatment, which represents a serious burden for them and their families and can have disastrous consequences in emergency situations. Our association is organizing an International Porphyria Patient Day in Lucerne, Switzerland, on May 18th 2013, to bring together patients and medical professionals from around the globe and advance the cause of porphyria sufferers. www.porphyrinsandporphyrias.org/patient-day Help us funding this important event and so contribute to safeguarding the welfare of porphyria patients and promoting their interests! Donations to the Swiss Society for Porphyria above CHF 100 are tax deductible for Swiss residents.
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