Rare Disease Day (February 28, 2025) is an internationally recognized awareness initiative held annually on February 28. It is dedicated to raising global awareness for the more than 300 million people living with rare diseases, including those with rare dermatological conditions. Established in 2008 by EURORDIS-Rare Diseases Europe and its Council of National Alliances, the day aims to bring attention to the unique challenges faced by rare disease patients — with a particular focus on reaching policymakers, healthcare professionals, researchers, and the general public.
For GlobalSkin and the RareDERM Community - a network of over 153 patient organizations representing approximately 29 rare dermatological diseases across all six WHO regions. Rare Disease Day is a powerful opportunity to spotlight the burden of rare skin diseases and advocate for better recognition, research, and resources globally.
In support of Rare Disease Day 2025, GlobalSkin provided its Members with a suite of customizable tools designed to amplify their voices online. These included downloadable social media cards and editable templates, allowing each organization to add their own branding and messages. By equipping Members with these resources, GlobalSkin helped enhance their digital outreach efforts, ensuring a unified yet locally relevant presence on social media platforms during the global campaign.
Rare Disease Day Fund & Project Highlights
We also supported 17 patient organizations in their Rare Disease Day campaigns through the Rare Disease Day Fund. This initiative was designed to empower rare disease communities and amplify their voices. By providing targeted funding and resources, we helped to enable these organizations to lead impactful projects tailored to their unique needs. These initiatives helped raise public awareness, advocate for policy change, foster patient engagement, and deliver meaningful support to individuals and families affected by rare skin conditions.
Member Experiences
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.
Shareable Social Media Posts
Customizable Social Media Posts
Campaign Outcome
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!
Social Media Awareness Campaign
Tools Created for RareDERM Community to Show Support on Social Media
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: