Celebrating Rare Disease Day 2016

World Rare Disease Day World Rare Disease Day Photo Credits: www.rarediseaseday.org

On the last day of February every year, families and friends of persons with rare diseases participate in a slew of activities online and offline, to build greater awareness of rare diseases...

...and the impact on lives.

This year marks the 9th year that Rare Disease Day is celebrated internationally across over 80 countries. Traditionally held on the last day of February, it will be celebrated worldwide on the 29th February this year, with the objective to build public awareness, influence policy makers, engage health professionals and together shape a better enabling environment for those with rare diseases.

On this day, hundreds of patient organisations from countries and regions all over the world will hold events to create and raise awareness for rare disease. For this year, the slogan of The World Rare Disease Day is "Join us in making the voice of rare diseases heard." For a look at how Rare Disease Day is celebrated around the world, visit the Rare Disease Day website here.

In Singapore, the Rare Disorders Society of Singapore (RDSS) and its partnering organisations will be presenting a series of events to engage the public, health professionals and families battling with rare disease. 

Club Rainbow, partnering RDSS, will kickstart a Care Connection seminar on Managing Rare Genetic Disorders on 27th February, featuring Dr Tan Ee Shien as keynote speaker. The seminar is open to public and more information can be sought here.  

On 28th February, there will be a celebrative event organized by RDSS for its beneficiaries and invited stakeholders. The event entitled Together in One Voice will see the coming together of some 200 Rare Disease patients and their caregivers, physicians, allied healthcare professionals, patient support organisations, pharmaceutical representatives and consultative policy makers. These key stakeholders who are vital in the care, management and awareness building for Rare Disease are represented by the multicolour handprint logo commemorating Rare Disease Day.

This event will feature fun and creative activities for attending children and youth, whilst focus groups will be conducted for adult patients and caregivers, providing them an opportunity to discuss and share their experiences on coping with rare disease and in identifying gaps in the chain of care that can continuously be improved to bring about a better quality of life for them. 

Together in One Voice event is supported by Rainbows Across Borders (RAB) and partnered by Playeum, Pulmonary Hypertension Support Group, Prader Willi Syndrome Singapore (PWSS) Support Group, Patient Support and Advocacy Group for Epidermolysis Bullosa and Club Rainbow Singapore . Held as a closed door event at Playeum, it will also see a launch of World Through My Eyes, a photo exhibition featuring families battling with rare diseases. 

Quick Facts on Rare Diseases

  • A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.
  • A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.
  • One rare disease may affect only a handful of patients in the EU (European Union), and another touch as many as 245,000. In the EU, as many as 30 million people alone may be affected by one of over 6000 rare diseases existing.
  • About 5000-8000 rare diseases are believed to exist around the world (Orphanet Journal of Rare Diseases) and in the United States alone, almost 7,000 diseases are considered rare. (NORD)
  • 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
  • 50% of rare diseases touch children.

References: 

Club Rainbow Singapore

Orphanet Journal of Rare Diseases

National Organisation for Rare Diseases

Rare Disease Day

Rare Disorders Society of Singapore

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