Rare Disease Day Fund Projects 2025

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For Rare Disease Day 2025, Beautifully Unblemished partnered with Hillcrest Elementary and Collins PK–8 to raise awareness about vitiligo and other rare diseases. The campaign reached over 1,000 students, educating them about skin differences and fostering empathy and inclusion from a young age. Through interactive presentations and classroom activities, students engaged in meaningful conversations, helping to reduce stigma and promote acceptance. The initiative not only increased visibility for individuals living with vitiligo but also sparked lasting social change within the school community and beyond through social media outreach. Staff praised the educational value, and students continued discussing what they learned even after the sessions—demonstrating the campaign’s lasting impact.

For Rare Disease Day 2025, the Light Up for Rare campaign successfully lit up 11 landmarks across Canada in Rare Disease Day colours, including the CN Tower, Niagara Falls, BC Place, and the Calgary Tower. These high-visibility displays, many of which were streamed and promoted by municipal offices, helped raise nationwide awareness of rare diseases. The campaign engaged patients and families across the country, who proudly contributed photos and advocated for local participation. This community-driven effort not only amplified visibility but also fostered unity, empowered patients, and advanced the organization’s goal of making rare diseases seen, understood, and ultimately better treated.

For Rare Disease Day 2025, CMTC-OVM produced a positive, uplifting video showcasing that people living with rare diseases can enjoy life to the fullest. The video gained wide visibility after being shared by multiple organizations, including EURORDIS, and received numerous compliments for its inspiring message. Its continued use in social media campaigns has strengthened the organization’s visibility and helped promote public understanding and acceptance of individuals living with rare diseases.

For Rare Disease Day 2025, the organization celebrated simultaneously in two cities for the first time, marking a major milestone in expanding its reach. Over 500 people (including local leaders, community members, and individuals with albinism) were engaged through awareness activities, radio outreach, and education on skin health. More than 300 sunscreens were distributed, and over 270 individuals received free skin cancer screenings. The campaign significantly increased national visibility and advanced the organization’s goal of raising awareness and providing essential care for people with albinism.

For Rare Disease Day 2025, a successful awareness campaign was held in a under-resourced city in Pakistan, marking one of the first initiatives of its kind in the region. The event engaged healthcare professionals and the public in meaningful discussions about rare dermatological diseases that are often overlooked. Patients expressed gratitude for having their conditions acknowledged and understood, breaking the silence surrounding their struggles. Despite limited resources, the campaign sparked dialogue among experts, raised community awareness, and advanced the organization’s mission to promote education, inclusion, and improved care for those living with rare diseases.

For Rare Disease Day 2025, Royal Patches hosted an inclusive awareness event that united patients with conditions such as sickle cell, vitiligo, albinism, pemphigus, pemphigoid, aquagenic pruritus, and eczema, alongside the deaf community. Through expert-led discussions and powerful personal testimonies, the event addressed stigma, misconceptions, and the medical and emotional challenges faced by those living with rare diseases. Participants shared deeply moving stories that fostered empathy, understanding, and resilience. Collaboration with dermatologists and mental health professionals provided valuable education on treatment and care. The initiative significantly advanced Royal Patches’ mission to promote awareness, inclusion, and support for individuals with rare skin conditions while strengthening community connections and reducing stigma.