Rare Disease Day 2022

Rare Disease Day is the official international awareness-raising campaign for rare diseases which takes place on the last day of February each year. The main objective of the campaign is to raise awareness amongst the general public and decision-makers about 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 96 patient organizations, located in 33 countries, representing 29 rare dermatological diseases raise awareness of the burden of rare skin diseases worldwide. 

We have created new resources to assist with Members’ social media presence on Rare Disease Day. We have designed images to download and templated cards where you can add your own logo. 

Leading up to February 28, we encourage Patient Organizations Members and Partners who support the RareDERM Community to raise awareness for rare dermatological diseases. 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:

1. For Members - These graphics include our "Proud Member" logo.
2. 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 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, 2022.  

Submit your story here

Need some inspiration? Here are a few suggested text options for your posts! 

#RareDiseaseDay is on February 28th! [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