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Diagnostic Delay

Diagnostic Delay

July 17, 2019

Clinuvel Pharmaceuticals emphasized the difficulty that patients with EPP experience

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Medical Moment: Your medical information, your laboratory results, and your privacy!

Medical Moment: Your medical information, your laboratory results, and your privacy!

July 17, 2019

We aim to protect the health and well-being of all patients and members.

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APF Member Featured on Local News

APF Member Featured on Local News

July 17, 2019

Terri Witter was featured on a local news segment

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Rare Disease Sufferers Fighting Both Their Condition and Federal Bureaucracy

Rare Disease Sufferers Fighting Both Their Condition and Federal Bureaucracy

July 11, 2019

This critical OpEd was published today about access to Panhematin.

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Rare Artist Contest

Rare Artist Contest

July 11, 2019

Art is a powerful and therapeutic way to express the challenges and triumphs that come with living with a rare disease.

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Patient Education and Support Meeting- NYC

Patient Education and Support Meeting- NYC

July 11, 2019

Last night, July 10th, the APF hosted a Patient Education and Support Meeting in New York City at Mt. Sinai

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Panhematin Problems???

Panhematin Problems???

July 11, 2019

Have you had problems or difficulties accessing Panhematin in a hospital setting

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Medical Moment: Publications by porphyria experts

Medical Moment: Publications by porphyria experts

July 3, 2019

Over the years, the experts of the Porphyrias Consortium have developed an extensive list of publications.

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Happy 4th of July

Happy 4th of July

July 3, 2019

The APF will be closed in observation of Independence Day on July 4th, 2019. We will resume normal office hours on July 5th, 2019 at 9am.

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EPP at Camp Sundown

EPP at Camp Sundown

June 27, 2019

Camp Sundown has provided children and families with the opportunity to take part in a unique camp experience.

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