International Rare Disease Day: More than a date on the calendar

By Isabel Edwards

A Celebration of Resilience and Community

Rare Disease Day celebrates resilience, community spirit, and collective action for rare diseases worldwide. Often, individuals and families affected by rare diseases have to become their own advocates, working hard in their campaigns for increased research, more awareness, and much-needed societal innovation.

On an individual level, rare diseases affect fewer people, but collectively, rare conditions impact around 1 in 17 individuals. This shared experience has fostered robust community networks, working together to improve lives through support and advocacy.

A Date as Unique as the People It Represents

It was first celebrated on 29th February 2008, the rarest date on the calendar, symbolising the uniqueness of the individuals it commemorates. The day recognises the resilience of those with rare conditions, the dedication of their families, and the work of healthcare professionals and researchers. Raising awareness helps people understand and creates opportunities for more substantial support systems, earlier diagnoses, and further research.

Celebrating Collaboration

A great example of advocacy is the work of Dr. Delai and two determined Brazilian mothers of children with FOP. Their advocacy allowed them to meet with Brazil’s then First Lady, Michelle Bolsonaro, raising national awareness and leading to the passing of a law requiring the checking of babies’ toes for early detection of FOP. Their story is a potent reminder that persistence and collaboration are powerful in bringing about positive change.

How Friends of FOP is Celebrating This Year

At Friends of FOP, we proudly take part in Rare Disease Day by taking action to amplify awareness and celebrate the solidarity of our community. This year some of our trustees are participating in the #ShowYourStripes campaign, a global movement that symbolises visibility for the rare disease community. The stripes are based on the ones on zebras, symbolising thinking beyond the obvious. It is based on the medical adage, “When your hoofbeats, think horses, not zebras.” By showing our stripes, we recognise the many conditions often overlooked in the diagnosis stage. Additionally, trustees Helen Bedford-Gay and Dr Andrew J Rankin are visiting Parliament as part of the Genetic Alliance Rare Disease Day Parliamentary Reception.  There will be presentations, speeches from people living with a rare condition as well as key policy makers; a selection of rare experiences; and an exhibition of selected works.

Rare Disease Day is more than raising awareness—celebrating resilience, amplifying voices, and making a more inclusive world. Join us in showing your stripes and supporting our remarkable community in celebrating this day.