7 days left to shout love for Stella, Auron Ruby!🎉 These three amazing kids have found each other through a shared rare diagnosis journey with Coffin-Siris Syndrome (CSS). Throughout the month, we’ve been sharing Auron, Ruby and Stella’s story to help raise awareness for CSS. Every purchase this month will help with the cost of adaptive bicycles for Ruby and Stella, and a special trip for Auron with his family. Visit www.goshout.love to learn more about their story. #goshoutlove #shoutloveforAu
1:08
7 days left to shout love for Stella, Auron Ruby!🎉 These three amazin…
1.3K viewsJan 19, 2023
FacebookGo Shout Love
Family shares their journey with Coffin-Siris Syndrome
Family shares their journey with Coffin-Siris Syndrome
Jan 27, 2024
spectrumlocalnews.com
ARID1B (associated with coffin siris syndrome) is extremely rare and complex and everyone who has an ARID1B mutation is slightly different while also often sharing many similarities and even facial features. Jace actually has two rare genetic mutations but the other one there is even less info on. Follow our journey for more on our daily life!❤️🫶 #geneticdisorder #raregeneticdisorder #arid1b #raredisease #coffinsirissyndrome #globaldevelopmentaldelay #autism #autismdiagnosis #mobilityissues #di
0:41
ARID1B (associated with coffin siris syndrome) is extremely rare and c…
19.3K views8 months ago
FacebookMomlifewithmara
living with Coffin-Siris Syndrome
living with Coffin-Siris Syndrome
Apr 5, 2024
montrealgazette
Day 5 of the coffin siris syndrome community challenge! Today is “a big milestone” so naturally I’m resharing this reel of one of his more recent milestones. 🥹🩵 #coffinsirissyndromeawareness #coffinsirissyndrome #raredisease #geneticdisorder #raisingrare @coffin_siris_foundation | Momlifewithmara
0:10
Day 5 of the coffin siris syndrome community challenge! Today is “…
10.2K views3 months ago
FacebookMomlifewithmara
Local woman shares story of living with Coffin Siris Syndrome
2:11
Local woman shares story of living with Coffin Siris Syndrome
32.7K viewsAug 5, 2017
YouTubeKING 5 Seattle
‘I spent the first year of my child’s life blaming myself, not wanting my child to have ‘special needs.’: Mom to daughter with Coffin-Siris Syndrome urges ‘you are your child’s best advocate’
‘I spent the first year of my child’s life blaming myself, not wanting m…
Oct 25, 2021
lovewhatmatters.com
5:32
Vivir con una enfermedad rara, el día al día con síndrome de Coffin …
Feb 28, 2023
RTVE.es
0:58
Maisy-Leigh has a rare condition called Coffin-Siris syndrome, with …
87.7K viewsMar 15, 2023
FacebookChestnut Tree House
1:48
living with Coffin-Siris Syndrome
184.9K viewsJan 2, 2015
YouTubeMontreal Gazette
0:08
Coffin-Siris syndrome is a rare genetic condition that is caused b…
13.6K viewsJan 21, 2023
FacebookGo Shout Love
‘She is the only person I know of with this mutation.’: Mom shares d…
Oct 8, 2021
lovewhatmatters.com
4:02
Coffin Siris syndrome will never stop Josiah #fypシ゚viralシfypシ゚ #ex…
206.9K views8 months ago
FacebookJoesmarie Parnell
1:18
Près d’Évreux, Élisa vit avec une maladie génétique rare, le syndro…
1.4K viewsApr 19, 2023
paris-normandie.fr
Síndrome de Coffin-Siris: una enfermedad rara con grandes nec…
Feb 24, 2023
debate.com.mx
0:59
Coffin Siris Syndrome Journey: Roel's Story
2.3K viewsDec 30, 2022
TikTok4.ruth
0:18
Night after night googling and I kept coming back to coffin siris syndro…
28.3K views8 months ago
FacebookMomlifewithmara
Amantini inicia una campanya per donar visibilitat a la Síndrome de …
Jan 27, 2022
terrassadigital.cat
6:53
Living with Coffin-Siris Syndrome: Our Family’s Journey & Experienc…
4.2K viewsJan 31, 2025
YouTubeJohnson County Board of Services
14:59
Dave is diagnosed with Coffin-Lowry syndrome. This rare geneti…
802.7K viewsNov 27, 2019
FacebookSpecial Books by Special Kids
0:46
Romans 8:25- “But, if we have HOPE for what we dont see, we wait for i…
151.6K viewsMar 14, 2024
TikTokparrishburgess
0:54
2021 Coffin-Siris Syndrome Conference Recap
1.6K viewsJun 6, 2021
YouTubeCoffin-Siris Syndrome Foundation
2:22
Santé : Le syndrome de Coffin-Siris (Sarthe)
35.9K viewsJun 7, 2017
YouTubeLMtv Sarthe
4:08
Day 5 of Coffin-Siris Awareness Month! Big Milestones! #raresyndr…
385 views3 months ago
TikTokhannahleigh91
3:51
Coffin Siris Syndrome Conference 2017 Seattle, WA
7K viewsSep 25, 2017
YouTubeMaria Riojas
4:53
Living with Coffin Syndrome - The Health Magazine
134.3K viewsFeb 13, 2021
YouTubeAllo Docteurs
1:13:53
Autism Spectrum Disorder - Amanda Pharris - Coffin-Siris Syn…
246 viewsJul 13, 2021
YouTubeCoffin-Siris Syndrome Foundation
5:06
Coffin Siris Syndrome Foundation Project for Awesome Video 2026
350 views2 months ago
YouTubeCoffin-Siris Syndrome Foundation
3:54
Coffin Siris Awareness
11.7K viewsDec 6, 2018
YouTubeErika Thomas
3:52
Children who are special needs are so much more than there disabiliti…
229.8K views7 months ago
FacebookJoesmarie Parnell
See more videos
Static thumbnail place holder