Rare Disease Day Fund

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

Show your Support on Social Media!

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:

For Members - These graphics include our "Proud Member" logo.
Brand Your Own - Add your own logo to the lower right-hand corner.

INSTRUCTIONS: Click and drag each social graphic to your desktop, and copy + paste the suggested text & hashtags #MySkinIsRare #RareDERM #RareDiseaseDay into your post.

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.

GlobalSkin Members - Social Media Posts

GlobalSkin Members - Twitter Posts

Brand Your Own - Social Media Posts

For Patient Organizations and Partners who support the RareDERM Community, if you wish to brand images with your logo, please only add it to the bottom right corner of the image, where space has been allocated.

Brand Your Own - Twitter Posts

For Patient Organizations and Partners who support the RareDERM Community, if you wish to brand images with your logo, please only add it to the bottom right corner of the image, where space has been allocated.

Social Media Banners

Drag each high-resolution image to your desktop and use it to change your Facebook, LinkedIn and Twitter profile banner to show support for Rare Disease Day 2023.

Facebook Banner

LinkedIn Banner

Twitter Banner

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.

Submit your story here

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