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Who do I see for porphyria?

Blood Cancers & Disorders | Last Active: Dec 2, 2022 | Replies (26)
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@clive1395

he in on the trial scenesse.
link in American porphyria foundation
for resources

he things Mitsubishi is exploring tablet forms soon. car-azy!

hope it all helps

clive

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Replies to "he in on the trial scenesse. link in American porphyria foundation for resources he things Mitsubishi..."
Colleen Young, Connect Director | @colleenyoung | Sep 4, 2022

Thanks, @clive1395, for finding out more about your brother's type of porphyria and treatment, namely he was part of the trial for Scenesse (afamelanotide) for treatment of Erythropoietic Protoporphyria (EPP).

I also noticed that you wanted to post a link with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

- Erythropoietic Protoporphyria (EPP) and X-Linked Protoporphyria (XLP) https://porphyriafoundation.org/for-patients/types-of-porphyria/epp-xlp/

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