Thursday, June 21, 2018

Porphyria Post

Porphyria Post

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 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!

Patient Perspective on Acute Intermittent Porphyria with Frequent Attacks:
A Disease with Intermittent and Chronic Manifestations

A new article was published recently about the patient perspective on Acute Intermittent Porphyria with frequent attacks. Click below to view the entire publication.

The Patient - Patient-Centered Outcomes Research

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.

Rare Disease Legislative Advocates is hosting In-District Lobby Days to facilitate meetings for rare disease advocates across the country with members of Congress in their local offices during the 2018 summer in-district work period (July 31st through Sept. 4th). 

Meeting with your representative and senators throughout the year is critical to building key relationships. These meetings also provide an opportunity to discuss legislation that is meaningful to the rare disease community, and to highlight the importance of the Rare Disease Congressional Caucus. Make YOUR voice heard as you advocate on behalf of the rare disease community!

Registration for In-District Lobby Days is FREE and open through July 4th. You will be provided the option to specify you availability and the distance you are willing to travel for a meeting.

All In-District Lobby Day participants will be invited to a webinar on Thursday, July 26th,at 2pm EST to go over key legislative issues and tips for successful meetings. Legislative asks will be available RDLA's website by late July.

Update your records....

We have moved.

The American Porphyria Foundation is excited to announce out move to Bethesda, Maryland - next door to our nation's capital. Please update your records with our new address.

American Porphyria Foundatin
4915 St. Elmo Ave., Suite 105
Bethesda, MD 20814
Telephone: 301.347.7166
Get Involved


Contact Information

Is your contact Information up to date?
If not please give us a call @ 
 866-APF-3635 or Email to

American Porphyria Foundation| 1.866.APF.3635 |


"Remember....Research is the Key to Your Cure!"

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