NEW RESEARCH STUDY FOR PORPHYRIA CUTANEA TARDA (PCT)

NEW RESEARCH STUDY FOR PORPHYRIA CUTANEA TARDA (PCT)

 

IMPORTANT!!! A new research study is starting for PCT. The Harvoni Treatment for Porphyria Cutanea Tarda study is beginning to recruit patients now. Please contact the APF office on 1-866-APF-3635 to learn details and find out how to participate.

 

LEGISLATIVE UPDATE

Yesterday, the US Senate joined the House in passing the Food and Drug Administration Reauthorization Act (FDARA) with broad bipartisan support. The Reauthorization Act, which occurs every five years, approves funding of the FDA. Among other provisions, these agreements "include the expansion of the FDA Rare Diseases Program; strengthening of the expedited review pathway for breakthrough therapies; development of a process through which real-world evidence can be utilized; continuation of the Patient-Focused Drug Development program; and the creation of the National Evaluation System for health Technology (NEST)."

The American Porphyria Foundation supports this legislation as it benefits and protects the rare disease community. We will keep our membership informed with updates in hope that this legislation is signed into law soon.

 

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