Clinuvel Pharmaceuticals emphasized the difficulty that patients with EPP experience
We aim to protect the health and well-being of all patients and members.
Terri Witter was featured on a local news segment
This critical OpEd was published today about access to Panhematin.
Art is a powerful and therapeutic way to express the challenges and triumphs that come with living with a rare disease.
Last night, July 10th, the APF hosted a Patient Education and Support Meeting in New York City at Mt. Sinai
Have you had problems or difficulties accessing Panhematin in a hospital setting
Over the years, the experts of the Porphyrias Consortium have developed an extensive list of publications.
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.
Camp Sundown has provided children and families with the opportunity to take part in a unique camp experience.