As we approach Rare Disease Day on February 28, 2025, we at Herts Ability are proud to join the global community in raising awareness for the 300 million people worldwide living with a rare disease, along with their families and carers.
Understanding Rare Diseases
A rare disease is defined as one that affects a small percentage of the population. Collectively, however, over 300 million people globally are impacted by more than 6,000 identified rare diseases. These conditions often lack effective treatments, and patients frequently face challenges in obtaining accurate diagnoses and appropriate care.
The Significance of Rare Disease Day
Established in 2008, Rare Disease Day is observed annually on February 28 (or February 29 in leap years) – the rarest day of the year. This day serves as a focal point to educate the public, influence policymakers, and advocate for equitable access to diagnosis, treatment, health and social care, and social opportunities for those affected by rare diseases.
Herts Ability’s Commitment
At Herts Ability, we are dedicated to supporting individuals with disabilities, including those affected by rare diseases. Our services are tailored to enhance independence and quality of life. For instance, in May 2023, we highlighted GBS/CIDP Awareness Month by sharing our client Claire Shaw’s journey – a client who was declared ‘Fit to Drive’ at our Harlow Centre after her experience with Guillain-Barré Syndrome.
How You Can Get Involved
- Participate in the Global Chain of Lights: On February 28 at 7 PM local time, light up your home with the Rare Disease Day colours to show solidarity. Use candles, colourful decorations, or even social media filters to share your support.
- Share Your Story: Personal experiences can inspire and educate others. Consider sharing your journey or that of a loved one on social media using the hashtag #RareDiseaseDay
By coming together, we can amplify the voices of those affected by rare diseases and advocate for meaningful change. At Herts Ability, we remain steadfast in our mission to support and empower individuals with rare diseases, ensuring they lead fulfilling and independent lives!
Join us this Rare Disease Day in making a difference. Together, we can transform awareness into action!
