Hello from your friends at the APF,
We're excited to announce Porphyria Awareness Week, April 15-22, 2023! Our theme is Spotlight Porphyria. Together let's put a spotlight on Porphyria to create awareness for all people impacted by Porphyria, including those who cannot be in the light. We have many events planned, see below for a full list of events and activities!
PAW is the time for You to reach out to your healthcare professionals and share educational materials and reach out to the local media in your community to share your experience. Please contact Deborah@porphyriafoundation.org, and she can email you porphyria materials to hand out. Plus, we have PAW activities for you to enjoy.
The APF has partnered with Recordati Rare Diseases to raise awareness of #Porphyria.
From April 15-21, be sure to CLICK THIS LINK https://bit.ly/3L2izl5, and @RecordatiRareUS will donate $5 (up to $5k) on your behalf to the American Porphyria Foundation. Spread awareness and help the APF attain a $5000 donation from Recordati. Thank you!
Reflect on your life and your blessings along the way!
Share your tips to help you cope with your illness and share the Two of Me documentary: https://www.porphyria.com/patient-stories/documentary
Let's Talk Porphyria ZOOM "Spotlight on Roadblocks to Diagnosis and Treatment" hosted by Nicole Castellano - Join Nicole and other patients, caregivers, and friends and showcase your roadblocks to diagnosis and treatment and share your coping tips. Others want to hear your testimony of your personal journey and how you overcame those roadblocks. Newly diagnosed patients and families can learn a lot from you Porphyria veterans. Don't want to share? No worries! Jump on and listen to others share their journeys.
HAT DAY FOR EPP KIDS - Please ask your school to allow all kids to wear hats to school on HAT DAY to support their EPP friends. Also, ask the teachers to allow the EPP kids to share
As an early pioneer of the Orphan Drug Act, Desiree Lyon has been invited to speak at the Capitol to share her experience in gaining the adoption of both the Orphan Drug Act and Panhematin as the first Orphan Drug.
We also ask patients to speak with their local media to feature their stories and share educational materials with doctors and local healthcare care professionals. Check Facebook
PORPHYRIA PARTNERS is a program the APF initiated during Covid to counteract the loneliness and isolation wrought by the disease. Since PORPHYRIA PARTNERS worked so well, we have decided to enhance the program because many porphyria patients are still lonely and isolated by porphyria. Debra Knapp will head the Porphyria Partners Program. Debra was a successful attorney who began to have terrible acute attacks. Eventually, her disease was so difficult that she could no longer work. Although she now uses her legal skills to some degree, she is choosing to help patients face their porphyria. You will hear from Debra about how to join Porphyria Partners.
Wear your purple clothes, hats, socks, glasses, and even purple hair! Since porphyrus means purple in Greek, purple has been used as the color of porphyria for a century. Color your world purple!