Rare Disease Day (February 28, 2025) 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 124 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.
Click below for the Rare Disease Day 2025 Fund
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 11, 2025.
Shareable Social Media Posts
Use these images as is, or click on each to add your own brand logo via Canva.
Customizable Social Media Posts
These images can be customized with your own pictures in the frames, as well as your own brand logo on the bottom right-hand side.
Suggested Text
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
Leading up to February 29, we encourage Patient Organizations Members and Partners who support the RareDERM Community to raise awareness for rare dermatological diseases on social media. Contribute to the conversation online by using the following hashtags alongside the below social media cards.
We have created two types of images for your ease of use:
INSTRUCTIONS:
1. Shareable images: Click and drag each social graphic to your desktop, and copy + paste the suggested hashtags #MySkinIsRare #RareDERM #RareDiseaseDay into your post.
2. Customizable images: You'll need to create a Canva account (if you don't already have one); Don't worry it only takes less than a minute. Once you gain access to the image, customize it, download it and share it with your networks.
***If you are not using social media, you can add the images to your website, add them to a newsletter or print them as postcards for an event.