Rare Disease Day 2025

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 153 patient organizations, spanning all 6 WHO regions, representing approximately 29 rare dermatological diseases to increase awareness of the burden of rare skin diseases worldwide. 

For Rare Disease Day 2025, GlobalSkin provided Members with resources to help leverage their social media presence. We designed social media cards to download along with templates where participating organizations could add their own logo.  

We also supported 17 patient organizations in their Rare Disease campaigns through the Rare Disease Day Fund. This initiative empowering them to drive impactful projects, raise public understanding, and support individuals living with rare skin conditions.

Download the Rare Disease Day 2025 Report

As part of the Rare Disease Day 2025 campaign, we invited Members and their patients to share their personal experiences of living with a rare dermatological condition. The responses we received were truly inspiring, filled with bravery, perseverance, and hope. We sincerely thank everyone who participated! Click here to read thier stories.

Leading up to February 28, we encouraged our Member Patient Organizations and Partners who support the RareDERM Community to raise awareness for rare dermatological diseases on social media. Organizations in the rare skin disease space contributed to the conversation online by using the following:

1. Shareable images - Organizations could download the files and share them with their social networks.
2. Customizable - Through Canva, participating organizations could easily customize each card by adding their own logo to the lower right-hand corner as well as uploading their own pictures into the framed designs.

The Rare Disease Day awareness campaign conducted by GlobalSkin was a resounding success, with a 3.1 million reach, 83,000 engagements and 22,500 website visits. Thank you to everyone, particularly our RareDERM Community spanning 153 patient organizations across all six WHO regions, for making this campaign impactful!