Rare Disorders Society (Singapore)

Rare Disorders Society (Singapore)

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Fostering hope, improving quality of lives of our beneficiaries and their families. Rare Disease (RD) patients form a minority of our society.

Background for the initiation of RDSS
Due to a lack of experience/resources, patients may not receive timely and accurate diagnosis. Delays in diagnosis or misdiagnosis may lead to serious complications, including disability and death. Our acknowledgement and investment can make significant changes to the quality of life of the RD patients. With early intervention, they too, can contribute positively towards our society.

Photos from Rare Disorders Society (Singapore)'s post 03/06/2026

A huge thank you to everyone who participated in our Snap • Tag • Post campaign and helped spread awareness for the rare disease community 💜📣

Congratulations to our Top 5 winners:
🌟 [IG]
🌟 [IG]
🌟 [IG]
🌟 [IG]
🌟 Zwee Wee Zi Huan [FB]

Every photo shared, every hashtag posted, and every conversation started helps shine a brighter light on the realities faced by individuals and families living with rare diseases.

Our RDSS team will be in touch via your socials to arrange the distribution of the prizes!

Through the collective voices of our community, media partners, supporters, caregivers, and RDSS’s continued advocacy over the years, we believe these small actions will continue to create a meaningful snowball effect towards a kinder, more patient, and more inclusive society.

While this marks the end of the Snap • Tag • Post campaign, the journey continues.

The deadline for the Carry Hope FUN-raising campaign has been extended to 31 July 2026, so keep posting, keep pushing, and keep showing up for the rare disease community. 💜🩷🩵💚

🔗https://www.giving.sg/donate/campaign/CarryHope2026

03/06/2026

Let’s take a trip back to Carry Hope Forum 2026, where healthcare professionals, industry partners, caregivers, beneficiaries, and advocates came together on 6 March, for meaningful conversations towards strengthening support for Singapore’s rare disease community.

Real change happens when different voices and perspectives come together, fostering greater understanding, collaboration, continued research, and medical advancements that can improve the quality of life for individuals and families living with rare diseases.

A huge thank you to everyone who contributed to these important discussions and helped make the forum possible 💜It is only with your voices, can we continue to take steps towards making real impact and advancements for our friends, families and community who are navigating their rare disease journey every single day.

Stay tuned for highlights from the Carry Hope Walk & Run and Carry Hope Carnival coming soon!

If you would like to make a tangible impact and support the rare disease community, the Carry Hope 2026 fundraising campaign has been extended till 31 July 2026 on giving.sg:
https://www.giving.sg/donate/campaign/CarryHope2026

Photos from Rare Disorders Society (Singapore)'s post 29/05/2026

Only 3️⃣ days left to Snap, Tag, Post! 📸

Let’s show the rare disease community some love by posing for some photos with our adorable sloth mascot, Hope 🦥

Don’t miss out on your chance to win an exclusive Carry Hope EZ-Link charm ✨

Don’t forget to tag us (Rare Disorders Society (Singapore)) and include the hashtags and !

Together, let’s help to spread awareness and Carry Hope for a brighter, more inclusive future 💜🩷🩵💚

Shoutout for RARE today!

Photos from Rare Disorders Society (Singapore)'s post 28/05/2026

Need a little more time to rally your community? We’ve heard you!

We’re excited to announce that the Carry Hope Virtual Fundraising Challenge 2026 has been extended to 31 July! ✨️

A big thank you to all our FUN-raisers so far. Every small effort is deeply appreciated and goes a long way in supporting our beneficiaries and their families.

Ready to start your FUN-raising journey? Support our rare disease community here: https://www.giving.sg/donate/campaign/CarryHope2026

Let’s continue to carry hope and show that 💜

Photos from Rare Disorders Society (Singapore)'s post 26/05/2026

What an unforgettable day we had at the Carry Hope 2026 Carnival and Walk & Run on Sunday! 🎉💜

From the lively carnival booths and showcases to the meaningful conversations shared at our Human Library, it was truly inspiring to witness so many people coming together in support of the rare disease community. Every step taken, every smile shared, and every act of support made the event even more special ✨

A heartfelt thank-you to our Guest of Honour, Mr Ong Ye Kung, Minister for Health and Coordinating Minister for Social Policies, our Special Guest, Mr Eric Chua, Senior Parliamentary Secretary, Ministry of Law and Ministry of Social and Family Development, invited guests, sponsors, partners, volunteers, performers, fundraisers, and dedicated team for making this event possible. Your passion and generosity helped us bring this meaningful celebration of hope and inclusion to life 💪🏻

We would also like to express our appreciation to Ms Denise Phua Lay Peng, Ms Poh Li San, Dr Hamid Razak 贺明医生 ஹமீது, Ms Anthea Ong, Prof Kenneth Mak, and Prof Chua Kee Chaing for taking the time to come down and show your support for our rare disease community.

Most importantly, thank you to everyone who joined us and stood alongside the rare disease community. We hope you had an amazing time, and we’re so grateful for the warmth, unity, and encouragement that filled the day. Let us continue to Carry Hope together! 💜

If you’d still like to go on supporting the rare disease community, the Carry Hope campaign is still open till 31 May here: https://www.giving.sg/donate/campaign/CarryHope2026.

Every contribution helps bring hope, care, and support to individuals and families living with rare diseases 💫

23/05/2026

📸 Day 1 of our Snap • Tag • Post challenge starts now 💜

Follow the steps in the image and stand a chance to win an exclusive Carry Hope EZ-Link charm ✨

The top 3 posts with the most likes will walk away with the prize, so gather your friends, snap a photo with Hope the sloth, and help spread awareness for the rare disease community!

Don’t forget to tag us (Rare Disorders Society (Singapore)) and include the hashtags and !

Together, let’s help to spread awareness and Carry Hope for a brighter, more inclusive future for our rare disease community. 💜🩷🩵💚

Photos from Rare Disorders Society (Singapore)'s post 23/05/2026

Only 1 more day to !

Participants, you are encouraged to come early, as our start pen opens at 8:00AM. Take note of your flag-off time: 8:30AM for 10KM runners and 8:40AM for 5KM runners!

Please remember to bring your bibs, which are included in your race packs if they were delivered to you. No bib, no stride!

If you have yet to collect your race packs, you can collect them from the Race Pack Collection Counter from 7.30AM on the day itself.

We’ve also prepared a handy map of the event space for easy navigation, check it out in the images below!

We can’t wait to carry hope with you tomorrow 💜 See you there!

23/05/2026

A heartfelt thank you to Kareem Andrew, one of RDSS’s beneficiaries, for penning this deeply moving poem for Carry Hope.

Through his words, Kareem Andrew captures the pain, exhaustion, and isolation that many individuals and families living with rare diseases quietly carry every day, while reminding us that hope can still be found through compassion, community, and support.

Thank you, Kareem Andrew, for sharing your voice and your strength with us 💜

We invite everyone to join us this Sunday at Carry Hope, or support the rare disease community by donating to RDSS.

Find out more about Carry Hope:
https://tinyurl.com/SupportCarryHope2026

Donate to Carry Hope:
https://www.giving.sg/donate/campaign/CarryHope2026

Photos from Rare Disorders Society (Singapore)'s post 22/05/2026

🎉Here’s to our current Top 3 Carry Hope FUN-raisers! 💜

Your passion and generosity are helping to uplift individuals and families living with rare diseases – one donation at a time.

🏆 #1 Carry Hope for Ashton & RDSS
🏆 #2 CH26 – Team Hazel
🏆 #3 Team Amazing Grace

Every dollar raised brings us one step closer towards a brighter and more inclusive future for our rare disease community in Singapore. ✨

It’s less than 10 days to the end of the Virtual Fundraising Challenge, so join us as a Carry Hope FUN-raiser today and rally your friends, family, and community to carry hope together!

Donate or start FUN-raising for Carry Hope:
https://www.giving.sg/donate/campaign/CarryHope2026

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