Global ncbrs awareness day
October 9th is Global NCBRS Awareness Day...
One day. One global community. Endless hope.
Every year on October 9th, families, friends, doctors, and supporters worldwide come together to shine a light on Nicolaides-Baraitser Syndrome (NCBRS).
With fewer than 340 confirmed cases worldwide, NCBRS is extremely rare. Because our community is small, your voice matters tremendously. Every post you share, every conversation you start, and every small donation you make helps us break the isolation, educate medical professionals, and support families navigating a new diagnosis.
Why October 9th?
We celebrate on October 9th in honour of June, the very first person diagnosed with NCBRS in medical literature back in 1993. Marking her birthday each year isn't just about looking back at how far research has come—it's about building a better, brighter future for every child and adult living with NCBRS today.
Every year on October 9th, families, friends, doctors, and supporters worldwide come together to shine a light on Nicolaides-Baraitser Syndrome (NCBRS).
With fewer than 340 confirmed cases worldwide, NCBRS is extremely rare. Because our community is small, your voice matters tremendously. Every post you share, every conversation you start, and every small donation you make helps us break the isolation, educate medical professionals, and support families navigating a new diagnosis.
Why October 9th?
We celebrate on October 9th in honour of June, the very first person diagnosed with NCBRS in medical literature back in 1993. Marking her birthday each year isn't just about looking back at how far research has come—it's about building a better, brighter future for every child and adult living with NCBRS today.
3 simple ways you can help this year...
You don’t need a massive platform to make a difference. Pick one (or all three!) of the ways below to join us on October 9th:
1. Take Two Minutes on Socials
- Frame your profile: Update your profile picture on Facebook or Instagram using our official awareness frames.
- Share our Infographic: Grab our latest NCBRS Infographic - it visually breaks down key numbers and gene details so your followers can learn at a glance.
- Share a post: Drop one of our graphics on your feed or story on October 9th.
- Tag us: Use our main hashtags so we can find and re-share your posts:
- #NCBRS
- #NCBRSRare
- #GlobalNCBRSAwarenessDay
- Quick facts to paste in your post:
- NCBRS is caused by a small change in the SMARCA2 gene located on chromosome 9.
- First described in 1993, the gene behind it was identified in 2012.
- There are currently fewer than 340 documented cases worldwide.
2. Reach Your Local Community
- Download the Information Leaflet: Print our official NCBRS Information Leaflet to hand directly to your GP, local therapists, teachers, or care teams. It gives healthcare professionals a clear, quick breakdown of the syndrome.
- Hand out cards: Print our quick-fact cards or flyers to share with your local GPs, therapists, teachers, or community groups.
- Wear orange: Put on something bright orange—our official campaign colour—or host an orange-themed scavenger hunt with local kids.
3. Host a Mini-Fundraiser or Donate
- Dress-down days: Ask your school or workplace to host an "Orange Dress-Down Day" for a small donation.
- Coffee mornings: Get together with friends, family, or neighbours over coffee and cake to chat about NCBRS.
- Facebook fundraisers: Set up a quick birthday or awareness fundraiser on Facebook.
- Donate directly: Every bit raised goes directly toward creating family support guides and funding critical research.
wear your support all year round...
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Looking for an easy way to spark conversations? Pop over to our online store to pick up official foundation T-shirts, hoodies, and a load of accessories.
100% of the profits go directly back to the foundation so we can keep supporting families, creating educational resources, and pushing research forward. |
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SIX years of standing together...
Since our very first Awareness Day in 2020, our global family has shared thousands of stories, hosted incredible local events, and helped put NCBRS on the map.
Here is a quick look at how our community has shown up over the years:
Here is a quick look at how our community has shown up over the years:
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2025 | Global NCBRS Awareness Day!!!
Thanks to everyone who joined us for #GlobalNCBRSAwarenessDay on Thursday, October 9th, 2025! To our families, supporters, donors, and partners, we couldn't do this without you. Your support helps us keep pushing for research, supporting families, and bringing this rare community closer together. Thank you for standing with us and helping make a real difference. #NCBRS #NCBRSRare |
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2024 | Global NCBRS Awareness Day!!!
We celebrated #GlobalNCBRSAwarenessDay on Wednesday, October 9th, 2024. We want to extend our heartfelt gratitude to all our families, supporters, donors, and partners for their incredible support. Your contributions have helped us raise awareness about NCBRS, support our families, promote research, and bring together this rare community. Thank you for making a difference and standing with us on this important day. Thank You #NCBRS #NCBRSRare |
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2023 | Global NCBRS Awareness Day!!!
We celebrated #GlobalNCBRSAwarenessDay on Monday, October 9th, 2023. We extend our heartfelt gratitude to all our families, supporters, donors, and partners for their support. With your assistance, we have been able to spread more awareness about NCBRS worldwide, raise funds to support our families and promote research, and most importantly, bring together this rare community to celebrate all those diagnosed with NCBRS and those who support them. |
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2022 | Global NCBRS Awareness Day!!!
On Sunday, October 9th 2022, we celebrated #GlobalNCBRSAwarenessDay! We want to say a huge THANK YOU to all our families, supporters, donors and partners for supporting #GlobalNCBRSAwarenessDay. With your help, we have been able to spread more awareness of NCBRS on a global level, raise funds so we can continue to support our families and promote research, but most of all bringing this rare community together to celebrate all those diagnosed with NCBRS and the people who support them. |
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2021 | Global NCBRS Awareness Day!!!
On Saturday, October 9th 2021, we celebrated #GlobalNCBRSAwarenessDay! We had a great day and loved seeing all our families, supporters and organisations sharing our posts and creating their own on social media. We would like to thank everyone who got involved to spread awareness of NCBRS and to all the people, businesses and more who either donated or fundraised for us. Thank You |
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2020 | First Annual NCBRS Awareness Day!!!
On Friday October 9th 2020, we celebrated our first ever NCBRS Awareness Day! It was a fantastic day and was great to see all our families and supporters sharing our posts and creating their own Facebook and Instagram posts and wearing our apparel. We'd like to thank everyone who got involved to spread awareness of NCBRS and make our first annual awareness day the success it was. Thank You |
A note from our foundation...
Whether you share a single post, hand a flyer to a local therapist, or make a small donation, please know that you are making a real difference.
Thank you for standing alongside our NCBRS families. Together, we make sure no family ever has to navigate this journey alone. 🧡💚💙
Thank you for standing alongside our NCBRS families. Together, we make sure no family ever has to navigate this journey alone. 🧡💚💙
