Do you have your colorful stripes ready?! Rare Disease Day is February 28th!
For 14 years the rare disease community has been coming together to build awareness and foster change for individuals living with rare diseases. 300 million people worldwide are impacted by rare diseases, more than cancer and AIDS combined. However, although just as common as cancer and AIDS, rare diseases are not offered the same resources and funds for research. The availability of care and the awareness around rare diseases is also lacking. Together we can change this and bring awareness and hope to the rare disease community!
What is Rare Disease Day?
Rare Disease Day is a global awareness day for rare diseases. Rare disease patient advocacy groups and foundations, like the GFPD, around the world join with one voice to push ahead change for rare diseases. Please check out all the amazing things happening for Rare Disease Day at our partner organizations: @NORD, @EVERYLIFE, @Global Genes @Eurodis
How to get involved!
There are several ways to get involved this Rare Disease Day! Please help us raise awareness, promote advocacy initiatives and fundraise for our research efforts!
- Wear your colorful stripes – “Sometimes when you hear hoofbeats, it’s really a zebra.” The zebra is the official mascot of rare diseases. We encourage you to put on your colorful stripes to support awareness of rare diseases.
- Share your pictures – while you are in your colorful stripes, be sure and take a picture of yourself holding your Rare Disease Day sign! Post your pictures and tag The GFPD!
- Watch Real and Rare with Mel & Courtney – Hop on Facebook at 3:00 PM CST for a Rare Disease Day REAL and RARE conversation with Melissa Bryce, co-founder and Executive Director of The GFPD and mother to Ginny, along with Courtney Morrison, mother of our 2022 GFPD Patient Ambassador Jayla! Mel and Courtney get REAL on all things mothering, caregiving, and daily life with a rare disease. Have your questions and comments prepared and get REAL with us on Rare Disease Day!
- Participate and SHARE The GFPD’s Rare Disease Fundraiser – As we work toward improving the lives of individuals with Peroxisomal Disorders, we recognize a big piece of that is advocating for legislation to improve the lives of our GFPD Warriors and championing research. You can help us make a difference by donating to and sharing our Rare Disease Day Fundraiser. We thank you for your generosity and for making a difference for a #GFPDWarrior today!
Join us as this Rare Disease Day as we celebrate our GFPD Warriors and champion change for them.
