Rare Disease Day (February 29, 2024) is an international day where we raise awareness for rare diseases, including rare dermatological diseases. The main objective is to reach decision-makers and the public by bringing attention to rare diseases and their impact on patients' lives. Rare Disease Day was launched by EURORDIS-Rare Diseases Europe and its Council of National Alliances in 2008.
Rare Disease Day is an opportunity for GlobalSkin and our RareDERM Community of over 120 patient organizations, spanning all 6 WHO regions, representing approximately 29 rare dermatological diseases to increase awareness of the burden of rare skin diseases worldwide.
To support this cause, GlobalSkin is providing Members with resources to help leverage their social media presence on Rare Disease Day. We have designed social media cards to download along with templates where you can add your own logo.
We have also introduced the Rare Disease Day Fund, to support our Members in their Rare Disease campaigns.
GlobalSkin CEO Jennifer Austin expresses her thoughts on Rare Disease Day 2024
Tell Us Your Story!
GlobalSkin looks forward to taking part in Rare Disease Day. This year we would like to feature stories or testimonials about what it is like to live with a rare dermatological disease. We encourage Members and their patients to share their stories and be showcased on our website and social media channels.
We’d love to hear from you! You are invited to write about your experience and add photos.
How it works
Submit your story by answering a couple of short questions in your language, in English or both by February 9, 2024.
Need some inspiration? Here are a few suggested text options for your posts!
#RareDiseaseDay is on February 29th! [Insert Your Organization Name Here] is part of the GlobalSkin RareDERM Community. Our [Insert Disease Name/Condition] is a rare dermatological disease. As a community, we are raising awareness for rare dermatological diseases worldwide. #MySkinIsRare
Today is #RareDiseaseDay! Over 300 million people around the world are living with a rare disease, including many rare dermatological diseases. As a Member of GlobalSkin, [Insert Organization Name] strives for a world where people living with rare dermatological conditions lead healthy and fulfilling lives. #RareDERM #MySkinIsRare
Rare Disease Day Fund
GlobalSkin is excited to be offering grants for the first time this year to Members through our new Rare Disease Day Fund for participation in the awareness day. We are proud to be supporting 15 members from 12 countries representing over 14 rare dermatological diseases in 2024.
Complete list of 2024 Rare Disease Day Fund recipients:
- DEBRA South Africa, South Africa
- CMTC-OVM, Netherlands
- Nevus Outreach, United States
- Youth and Women Empowerment Initiative Uganda, Uganda
- Skin SriLanka, Sri Lanka
- National Foundation for Ectodermal Dysplasias, United States
- Albinit, Italy
- Stevens-Johnson Syndrome Canada, Canada
- Corbetta RDC, Democratic Republic of Congo
- Royal Patches, Kenya
- Xeroderma Pigmentosum Society, South Africa
- International Pemphigus & Pemphigoid Foundation, United States
- FAIM Autoimmune Diseases, Denmark
- Scleroderma Awareness Philippines, Philippines
- DEBRA Croatia, Croatia
Thank you to our Rare Disease Day Fund Partners; Boehringer Ingelheim and Sanofi Regeneron.