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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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Bench to Care

Bench to Care

September 6, 2019

The International Congress on Porphyrins and Porphyrias (ICPP)

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Raising our Porphyria Voices at the FDA!

Raising our Porphyria Voices at the FDA!

August 29, 2019

The Food and Drug Administration (FDA) hosted the American Porphyria Foundation on Monday, August 26th

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Welcome to the AFP!

Welcome to the AFP!

August 29, 2019

Please share in a warm welcome to Iany Schneider, our new Administrative Assistant at the APF. 

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Update from CLINUVEL on US FDA REVIEW PROCESS SCENESSE®

Update from CLINUVEL on US FDA REVIEW PROCESS SCENESSE®

August 22, 2019

Ongoing interactions continue to take place.

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Medical Moments

Medical Moments

August 22, 2019

Do you know the benefits of Prophylactic Heme Treatment?

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Find Your Shadow 2019

Find Your Shadow 2019

August 22, 2019

Last week the APF sent the McKillop Family to the “Happiest Place on Earth”

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FDA Rare Disease Listening Session

FDA Rare Disease Listening Session

August 16, 2019

The APF will be participating in a FDA Rare Disease Listening Session

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Find Your Shadow 2019

Find Your Shadow 2019

August 16, 2019

This year's Find Your Shadow recipients

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Panhematin Prophylactic study

Panhematin Prophylactic study

August 16, 2019

Seeking patients who receive prophylactic heme treatment and the treatment has been working for them.

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