Rare Disease Day 2021

  • Friday, February 26, 2021

We are Rare. We are Porphyria Strong!

There are more than 7,000 rare diseases affected 25-30 million Americans. One in ten Americans are suffering from a rare disease and more than half of them are children. Only 5% of rare diseases have an FDA-approved treatment (Porphyria has three!)

10 Things YOU can do for Rare Disease Day:

  1. Share your rare! Tell your story on the APF Member Stories area at https://porphyriafoundation.org/for-patients/member-stories/
  2. Show Your Stripes! The zebra is the official symbol of rare disease in the US, known for its unique stripes. Wear stripes in support of the rare disease community.
  3. Share the official Rare Disease Day video 2021 https://www.rarediseaseday.org/video
  4. Attend NIH Rare Disease Day event on Monday, March 1 – free! https://ncats.nih.gov/news/events/rdd
  5. Attend FDA Rare Disease Day event on Friday, March 5 – free! https://www.fda.gov/industry/orphan-products-development-events/fda-rare-disease-day-2021#:~:text=On%20March%205%2C%202021%2C%20FDA,of%20which%20have%20no%20treatment.
  6. Contact your legislative representatives to request greater focus on treatments and cures for rare disease patients. https://rarediseases.org/advocate/policy-priorities/contact-representatives/
  7. Consider joining Rare Disease Week on Capitol Hill 2021 https://everylifefoundation.org/rare-advocates/rare-disease-week/
  8. Read this article about a delayed rare disease diagnosis of acute intermittent porphyria: https://littlethings.com/lifestyle/mom-opens-up-about-her-rare-disease-after-20-years-of-pain-and-uncertainty/donna-3
  9. Change your social media frame + badge for #RareDieseaseDay https://www.rarediseaseday.org/downloads
  10. Know the Facts! If you or a family member live with porphyria or ANY rare disease, here are facts some facts for you to learn and share. https://download2.rarediseaseday.org/2021/Equity_Toolkit_Rare_Disease_Day.pdf