All News

FDA approval of SCENESSE® (afamelanotide 16mg)

FDA approval of SCENESSE® (afamelanotide 16mg)

October 11, 2019

Scenesse was approved by the FDA on October 8 as a treatment to increase pain-free time in the light for patients with EPP.

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The FDA APPROVES SCENESSE!

The FDA APPROVES SCENESSE!

October 8, 2019

The FDA has granted APPROVAL for Afamelanotide (Scenesse) for the treatment of Erythropoietic Protoporphyria!

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Porphyria Post

Porphyria Post

October 8, 2019

Please consider a donation to the American Porphyria Foundation.

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Rare Disease Week on Capitol Hill Travel Stipend Application

Rare Disease Week on Capitol Hill Travel Stipend Application

October 4, 2019

Submissions are being accepted for travel stipends to attend the 2020 Rare Disease Week

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Consortium NIH Grant Renewal - Notice of Award

Consortium NIH Grant Renewal - Notice of Award

September 26, 2019

5-Year Grant Renewal

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FDA Countdown for Scenesse for the Treatment of EPP - 10 days!

FDA Countdown for Scenesse for the Treatment of EPP - 10 days!

September 26, 2019

The set date for the FDA decision regarding approval of Scenesse is 10 days away.

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International Congress of Porphyrins and Porphyrias (ICPP)

International Congress of Porphyrins and Porphyrias (ICPP)

September 12, 2019

The ICPP meeting held in Milan, Italy, September 8-11, was a global success!

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Global Porphyria Advocacy Coalition Formalized (GPAC)

Global Porphyria Advocacy Coalition Formalized (GPAC)

September 12, 2019

GPAC has been formalized.

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CEP Patient Education Webinar

CEP Patient Education Webinar

September 6, 2019

The American Porphyria Foundation hosted a CEP Patient Education and Support Meeting via online webinar.

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Canadian Blood Services - Access to Panhematin

Canadian Blood Services - Access to Panhematin

September 6, 2019

We are excited to share that Recordati Rare Diseases Canada Inc. announced...

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