American Porphyria Foundation PAW WEEK INFORMATION SHEET

  • Apr 5, 2021

Are you ready for PAW? What is that you ask? Porphyria.Awareness.Week

FOR IMMEDIATE RELEASE: 03/1/2021

Contact: Edrin Williams, MHSA – Director of Patient Services Kristen Wheeden,

MBA – Executive Director Phone: 1-866-APF-3635 Email: edrinw@porphyriafoundation.org |

kristen@porphyriafoundation.org

“LET’S TALK ABOUT PORPHYRIA” CAMPAIGN BRINGS ATTENTION TO RARE, LIFE-THREATENING DISEASE

American Porphyria Foundation to Host Porphyria Awareness Week April 10-17, 2021 (BETHESDA, MD) –

                                                                                                                                                                                                       Porphyria affects fewer than 200,000 Americans. Due to the wide array of symptoms and the rarity of the condition, porphyria is often misdiagnosed and misunderstood by the medical community. The American Porphyria Foundation is working to change that. The non-profit porphyria research and advocacy organization is hosting Porphyria Awareness Week April 10-17 to spread the word about Porphyria. “Porphyria Awareness Week has grown substantially in previous years and now represents a push for global awareness of porphyria research efforts and treatment,” says APF Executive Director, Kristen Wheeden. Porphyria is not a single disease but a group of eight inherited genetic disorders that differ considerably from each other. A common feature in all the Porphyrias is the accumulation in the body of porphyrins or porphyrin precursors.

These are normal body chemicals, but they normally do not accumulate. Precisely which of these chemicals builds up depends on the type of Porphyria. Supporting the Porphyria community since 1983, the APF’s mission is to improve the health and well-being of all individuals and families impacted by Porphyria. The APF maintains a focus on education, advocacy, support services and research for the prevention, treatment and cure of the Porphyrias. Additionally, the APF serves as patient advocates to public, private, and government agencies interested in funding research and educational programs.

The APF Scientific Advisory Board is comprised of the world's foremost experts in Porphyria diagnosis, management and treatment. Throughout Porphyria Awareness Week, the APF will continue to educate others on porphyria by collecting and distributing awareness information from patients and the APF on Twitter, Instagram and Facebook.

Visit the Porphyria Awareness Week 2021 landing page for more information, listing of special events, and a media kit. For more information on Porphyria, Porphyria Awareness Week and the American Porphyria

 


 

Comments

Post a Comment

Required Field