New EPP Clinical Trials
Clinical Trial for EPP!
Participants are needed for participation in a Phase II clinical trial to study an investigational drug for EPP. CONTACT THE APF ON 1-866-APF-3635 or email firstname.lastname@example.org to learn more.
An oral investigational drug has been developed with the potential to increase sunlight duration and tolerance in
individuals with EPP. This phase II clinical trial is needed to understand if the investigational drug works and to
ensure that it is safe. The study duration is 24 weeks including follow-up. You must be age 18-70 to participate and have a confirmed diagnosis of EPP. All travel is included and will be arranged by a concierge service.
Contact the APF today – trial spaces will fill quickly! 1-866-APF-3635.
"Remember...Research is the key to YOUR cure!"
Each Step Toward Finding an Effective Treatment is Important!
Watch out, Boise Spartan Race, here comes Jared Ulmer! A self-described family man and health enthusiast, Jared also lives with Erythropoietic Protoporphyria (EPP) - a rare diseases that results in extreme pain with exposure to sunlight. You may know Jared from his YouTube channel, PorphyriaJ where he creates awareness about this rare disease and illustrates living with it in his own unique way through honest and entertaining short videos. (Porphyria J)
This Saturday JUNE 23rd at 8:45AM MST, Jared will take on the SPARTAN SPRINT! Jared will run 3+ miles and overcome 23 daunting obstacles in the Boise Spartan Sprint on behalf of Porphyrians everywhere. The Spartan race motivates people to get out of their comfort zones and grow through resiliency. In order for Jared to complete this race - he will test every ounce of his resilience. For Jared, this race is an outward expression of a deep internal struggle that has developed through a lifelong challenge of avoiding sun exposure. He wants all who suffer from this disease - which has no FDA-approved treatment and no cure - to know they are not alone and to believe that positivity is created by taking care of yourself and focusing on what you can do. You will hear Jared say 'Seek Shade and Stay Happy' - a motto he lives by and shares with all who suffer along with him.
Jared will race on behalf of the AMERICAN PORPHYRIA FOUNDATION. Donations to the American Porphyria Foundation can be made through FirstGiving. Please help Jared reach his goal of raising $1,000. The APF enhances public awareness, develops education programs and materials, and supports research to improve treatment and ultimately a cure for Porphyria. Jared still has his original APF pamphlet and free materials he and his parents first received due to donations like yours. These free materials are what educated Jared on how to handle EPP, and that let him know he wasn't alone. PLEASE SUPPORT JARED AND ALL WHO LIVE WITH EPP ON JUNE 23RD BY DONATING TO THE APF!