Group Porphyria Support

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Home - American Porphyria Foundation

    https://porphyriafoundation.org/
    Acute Intermittent Porphyria "Despite it all I have a positive attitude due to my amazing family, friends and support team. Everyone that I have met through Facebook, the APF, and re groups have been there for us and we are grateful." See All Member Stories

Porphyria Support Groups Online DailyStrength

    https://www.dailystrength.org/group/porphyria
    Nov 13, 2018 · Porphyria Support Group. The porphyrias are inherited or acquired disorders of certain enzymes in the heme biosynthetic pathway (also called porphyrin pathway). The hepatic porphyrias primarily affect the nervous system, resulting in abdominal pain, vomiting, acute neuropathy, seizures, and mental disturbances, including hallucinations ...

Porphyria Support Group - MDJunction

    https://www.mdjunction.com/porphyria
    The Porphyria Support Group is a community of patients, family members and friends dedicated to dealing with Porphyria, together. MDJunction. Ask a Question Login Sign Up. Search. Porphyria Support A community of patients, family members and friends dedicated to dealing with Porphyria…

List of patient support groups European Porphyria Network

    https://porphyria.eu/de/content/list-patient-support-groups
    Japanese porphyria patients group, “SAKURA Friends” (SAKURA means cherry blossoms) was formed in 1997 by porphyria patients, families and support volunteers. Today the group has 66 members. The group’s activities include issuing newsletters three times a year, organizing gatherings and study meetings, providing information and encouraging ...

Porphyria International Support & Education Group Public ...

    https://www.facebook.com/groups/porphyriafoundation.org/
    Welcome all to Porphyria International Support & Education Group. This an excellent resource to learn about Porphyria types, treatment, research efforts and trusted medical facts from Worldwide...

Porphyria cutanea tarda Skin Support

    http://www.skinsupport.org.uk/conditions-details/porphyria-cutanea-tarda
    What is porphyria cutanea tarda? PCT is one of a group of disorders (known as the porphyrias) caused by a range of enzyme defects in one of the biochemical pathways in the body. Any one of these can result in a build-up of chemicals called porphyrins. ... Links to patient support groups: British Porphyria Association Tel: 0300 30 200 30 Email: ...



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