|
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:
- Share your rare! Tell your story on the APF Member Stories area at https://porphyriafoundation.org/for-patients/member-stories/
- 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.
- Share the official Rare Disease Day video 2021 https://www.rarediseaseday.org/video
- Attend NIH Rare Disease Day event on Monday, March 1 – free! https://ncats.nih.gov/news/events/rdd
- 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.
- Contact your legislative representatives to request greater focus on treatments and cures for rare disease patients. https://rarediseases.org/advocate/policy-priorities/contact-representatives/
- Consider joining Rare Disease Week on Capitol Hill 2021 https://everylifefoundation.org/rare-advocates/rare-disease-week/
- 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
- Change your social media frame + badge for #RareDieseaseDay https://www.rarediseaseday.org/downloads
- 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
|
