Let's all celebrate life for LOVE is not RARE!

?Authored by: Kenneth Mah, Vice President, Rare Disorders Society of Singapore (RDSS)

Today marks the annual #RareDiseaseDay, a milestone for us to be united on all fronts to raise awareness on the varying yet unique rare diseases, including those that continue to receive little to no attention at all. ?Patients with rare diseases often do not get a proper diagnosis for years, and receive no treatment for their condition, resulting in poor quality of life.

?In Singapore, there are around 2,500 people living with rare diseases,[i] and today is a reminder for us to continue advocating for greater health equity for them and their loved ones. Today, we see a very different scenario compared to when Rare Disorders Society of Singapore (RDSS) was first established in 2011 – and there are many reasons for us to be optimistic about the future in rare diseases.

?We’ve received support from many stakeholders, starting with the public sector. We see enhanced support by the government as it rallies all levels of society to better support patients with rare diseases.

?For example, in 2019, the Rare Disease Fund was set up by the Ministry of Health and SingHealth Fund to financially support rare disease patients who may require effective treatment, but often cannot afford the associated high costs.[ii] The government has committed to match donations on a three-to-one (3:1) basis, and as of July 2022 has raised up to $137.9 million.[iii]

?This initiative demonstrates that there lies power from government’s steadfast leadership and our community’s generosity to ensure such crowdfunding is successful. ?

?In addition, thanks to steady progress in science, specifically in precision medicine, more and more patients are likely to be diagnosed conclusively and receive the right treatments to target those genetic mutations. For example, the Bringing Research Innovations for the Diagnosis of Genetic Diseases in Singapore (BRIDGES), launched in 2014, has assisted one in three children to be formally diagnosed, which meant that doctors could better care for them.[iv]

?Social support programmes can help families to cope better with the emotional and mental challenges from a rare disease diagnosis, by offering mental and emotional support that only someone with shared experiences can relate to. In this vein, we have launched the Siblings Support Programme for both youths(>13 years old) and children (4 -12 years old) whose siblings have rare diseases. Semi-annually, siblings come together to learn from and support each other on how to develop their strength and advocate for their own special needs siblings better through various empowering activities such as planning, emceeing events or simply story sharing[v]. While their sibling’s disease may be rare, their journey is never alone.

?The struggles of the few faced with such unique health conditions are often forgotten and overlooked when compared to the conditions that affect the majority. As such, we commit to keep rare diseases top of mind.

?In commemoration of Rare Disease Day, we hosted the third annual Carry Hope Walk-A-Jog on 26th February and were honoured to be graced by Mr. Ong Ye Kung, Minister for Health. The event also includes fundraising that extends until April to inspire others to carry hope for our beneficiaries, many of whom may not be mobile. By participating, we are carrying the dreams of the rare disease community of not being left behind by the healthcare system, as they wait for a medical breakthrough for their disease. The fundraising campaign doesn’t stop at the event yesterday, it is still ongoing until end of April 2023. We continue to advocate for equity and empower our beneficiaries to help improve their quality of life. “Hope”, is Carry Hope’s dear sloth mascot that represents the many dreams and wishes of our beneficiaries with a rare condition. Carrying “Hope” is akin to carrying the beneficiaries’ hopes with us. We count on your support to be one of our ambassadors of #CarryHopeRDSS.

Click here to support: https://give.asia/campaign/carry-hope-2023#/

?The focus for this year’s Rare Disease Day centers on health equity. While we have made significant progress for the rare disease community, let us not lose sight of the journey yet to be trekked for those who are navigating through an odyssey of misdiagnoses, isolation and treatment inequality. Let us work towards a future where people living with rare diseases and their loved ones have equitable opportunities and access to the healthcare they deserve.

?#RareDiseaseDay #CarryHopeRDSS #ShareYourColours #LightUpForRare #LoveIsNotRare