United Porphyrias Association
United Porphyrias Association
874143089
2021
Bethesda, MD 20814-2934 USA
porphyria.org
UnitedPorphAssc
Podobné organizace
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Hydrocephalus Association |
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Podobné organizace global
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CANADIAN ASSOCIATION FOR PORPHYRIA INC./ASSOCIATION CANADIENNE DE PORPHYRIE INC. |
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Similar social media (172)
News
In recent months the porphyria community lost several beautiful souls. In her latest column, Kristen remembers Lindsay, Franklin, and Lou, and reflects on how their lives inspire us to continue fighting for treatments, care and support💜 Read more: https://t.co/HcyEro0FR2 https://t.co/Didog87jeK (tw)
On #UndiagnosedDay, we raise our voice for those still searching for answers. The average time to diagnosis is 13 years for EPP, and 6.4-15 years for acute porphyrias. No one should wait this long. https://t.co/A8YVYccPOH (tw)
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About the organization
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Everything you need for your porphyria journey UNITED PORPHYRIAS ASSOCIATION We are committed to improving the quality of life of the porphyria community and focused on advancing disease awareness research and therapies for all the porphyrias. Quick Access Links Seeking a Diagnosis Think you may have porphyria. Learn how porphyria is diagnosed and how you can access testing. Living with Porphyria Porphyria can impact every part of your life.
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