Rare Disease Day

Friday 28 February 2025

It’s Rare Disease Day on Friday 28 February.

Zebras represent rare diseases. American medical research and 1948 Nobel prize winner Dr Theodore Woodward, is quoted as saying “When you hear hoofbeats, think horses, not zebras”.

The rare disease community is reclaiming the zebras.  Zebras should be considered when making a diagnosis - especially when people with rare diseases have generally been on a 'diagnostic odyssey', presenting unexplained symptoms for, on average, seven years. So, please meet our ultra-rare zebra, representing ultra-rare FCS!

What are the universal challenges faced by those living with a rare disease?

  • The lack of scientific knowledge and reliable information on rare diseases often leads to delays in diagnosis.
  • The need for high-quality, specialised healthcare creates inequalities and barriers to accessing rare disease treatment and care.
  • International collaboration in research is vital to connect researchers and clinicians, ensuring progress in diagnosis, treatment, and care.
  • Due to the wide diversity of rare disorders and the presence of relatively common symptoms that can mask an underlying rare disease, misdiagnosis is common. Moreover, symptoms not only vary between different diseases but can also differ among patients with the same condition.

Get involved on Rare Disease Day - wear stripes to represent rare diseases, and if you use social media, post your support on your favoured platform.

There are useful resources available on the Rare Disease Day website (go through the pink button above).

 

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