Givosiran Trials Update and much more

Givosiran Trials Deadline

The life changing Givosiran research trials will be closing for more acute porphyria patients on Friday, June 29.

YOU have the opportunity to become a patient volunteer. As such, you will receive FREE DRUG for TWO YEARS. Your travel expenses will be paid, including flights, train, car, meals, hotel and a travel stipend.

We cannot improve treatment or have a cure unless YOU, the patient, volunteer FOR THE RESEARCH. If you have an acute porphyria, please be a medical hero and join the trials in the cities below. You will be with a porphyria expert and a research team. Please call Edrin at the APF Office on 301.347.7166. Or our toll free number 866 APF 3635.


Poprphyria in the Press

Dr. Bruce Wang (Porphyria Expert, UCSF) and Mary Schloetter (AIP) completed seventeen back-to-back interviews with a variety of media outlets during a satellite media tour early morning during Porphyria Awareness Week, which was arranged by Alnylam Pharmaceuticals. Their interview series focused on the burden of living with an acute hepatic porphyria and the enormous need for physician awareness.

The combination of an expert physician and a passionate patient advocate was effective as all seventeen interviews were picked up and distributed by local news outlets. All interviews can be viewed at Porphyria in the Press PAW 2018.


A New Class of Medicines

The Heroes Among Us

Desiree Lyon (Executive Director) and Kristen Wheeden (Director of Development) of the American Porphyria Foundation recently participated in a New Class of Medicines series by Alnylam Pharmaceuticals.

Click here to read about The Heroes Among Us.


APF Office Move

We want to take the time out to thank everyone that sent their warm wishes and support shown to the APF Staff on our move to Bethesda, MD.

Please update your records with our new address and phone numbers.

American Porphyria Foundation
4915 St. Elmo Ave., Suite 105
Bethesda, MD 20814
301.347.7166 ( Office )
1.866.APF.3635 ( Toll-Free )


"Remember......Research is the key to your cure!"