Rare Disease Day Shines A Spotlight On Singapore's Unique Challenges

According to rarediseaseday.org, a disease is deemed rare when it affects fewer than 1 in 2,000 people. Shockingly, 70% of these rare diseases manifest in childhood, creating unique challenges for affected families. More than 6,000 of these conditions have been identified, with a staggering 72% having genetic origins. Notably, 1 out of 5 cancers is categorised as rare, further underscoring the complexity of these conditions.

Rare Disease Day, observed every last day of February (28th, or 29th in a leap year), stands as a global movement championing equity in social opportunities, healthcare, and access to diagnosis and therapies for those battling rare diseases.

Since its inception in 2008, this day has not only created a worldwide rare disease community but has also become a catalyst for change in local, national, and international advocacy efforts.

Coordinated by EURORDIS (Rare Diseases Europe) and supported by more than 65 national alliance patient organisations, Rare Disease Day provides a focal point to address the unique challenges faced by the 300 million people worldwide affected by rare diseases.

In Singapore, an estimated 2,000 to 3,000 people are afflicted with chronic rare diseases, according to the Ministry of Health.

A glimmer of hope comes in the form of the Rare Disease Fund (RDF), which aims to bridge the financial gap, supporting patients in dire need of expensive treatments that lack readily available remedies. The RDF's unique set-up magnifies the impact of generosity, with each donation met by a 3-to-1 government match and a 250% tax deduction, making the act of giving back even more rewarding.

Here are some ways you can bring about positive change and give back on Rare Disease Day:

• Donate to the Rare Disease Fund.
• Donate to Rare Disease Society Singapore, which to enhance patients’ quality of life by funding their pursuit of timely interventions and sustainable treatments.
• Donate to the Reverie Rheumatology Research Fund, to enable progress in research, including predicting disease flares, developing new treatments, sustaining research teams, and funding pilot projects.
• Donate to the Sarcoma Research Fund. Sarcoma is a type of cancer that originates in the connective tissues, including bones, muscles, cartilage, and tendons.
• Volunteer as a Patient Navigator, who assist patients at the Specialist Outpatient Clinics; self-registration kiosks, as well as provide translation help for patients and way-finding around the clinics.

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