What are the opening hours?

Monday 8:30am - 5pm Tuesday 8:30am - 5pm Wednesday 8:30am - 5pm Thursday 8:30am - 5pm Friday 8:30am - 5pm

CdLS Foundation

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United States
Avon, CT
CdLS Foundation

This page is where people can connect with each other and the CdLS Foundation staff. We serve the United States in our office, but those outside of the U.S.
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The CdLS Foundation provides a host of services that educate and unite families touched by this little-known genetic syndrome. Each day, we enlist the support of hundreds of dedicated volunteers throughout the United States, as well as the expertise of professionals from the fields of genetics, medicine, education, psychiatry, and more, in our effort toward advancing both societal and scientific u

nderstanding of CdLS. can find more information and contacts by visiting http://www.cdlsworld.org/xwiki/bin/view/Main/WebHome. The CdLS Foundation does not discriminate based on the basis of race, color, religion, disability, national origin, genetic information, s*x (including pregnancy), age, s*xual orientation, gender (including gender identity and expression), marital status, protected veterans status, citizenship status or any other characteristic protected by applicable law.

06/18/2026

Thank you for joining us in Missouri for our family gathering! The Sprehe family hosted a fun, purple-themed gathering with 10 local families. Check out photos from the day!
There might be an upcoming family gathering in your area this year!
Visit our website or contact the Family Services Team for more information [email protected]

06/17/2026

Lace up, have some fun, and support your Foundation with Team CdLS at the 25th anniversary of the Baltimore Running Festival, Saturday, October 17. The BRF is known for its vibrant atmosphere, live music, great crowds and scenic views of Baltimore. Team members can choose from a variety of options: marathon, half marathon, 5K and fun run.
Register here today - https://ow.ly/TK9T50Z6RLN
Not a runner? Join our Curb Crew and cheer the team on.
Contact Lisa Schroeder, events manager at [email protected]

06/16/2026

You asked, we answered!

You asked: My 15-year-old daughter is showing no signs of puberty. Should I be concerned about her bone strength in the future? We are seeing the endocrinologist soon, but I wanted to go in with more information to ensure I am advocating for her the best I can. I have seen reports of some individuals with CdLS having brittle bones in the early years.

Answer: We recommend checking Vitamin D levels and treating them if they are low. Of course, being active is helpful. Delayed puberty could contribute to bone issues, but we have seen osteopenia in menstruating females as well. And her size also puts her at risk. It is good that an endocrinologist will evaluate her.

Do you have a question for our experts in CdLS? Please submit it here: https://www.cdlsusa.org/submit-question/

06/15/2026

If you or someone you know is planning a wedding and loves the mission of our Foundation, skip the traditional wedding favors and donate to support individuals with CdLS on the guests’ behalf! 💜
Give an individual with CdLS and their family a better chance at their own happily ever after.
To donate visit: https://givebutter.com/cdlsdonation

06/14/2026

"When my daughter was diagnosed with a rare and life-limiting condition, my world changed in an instant. I was thrown into an unfamiliar place that I did not recognize—a world of uncertainty, fear, grief, and helplessness. As a father, I felt an overwhelming urge to fix it. That is what we do, right? We solve problems. We protect. We provide.
But what happens when the problem is your child’s illness—and it can’t be fixed?"
Read more of this father's perspective on our website.
https://www.cdlsusa.org/pediatric-palliative-care-a-fathers-perspective/

06/13/2026

Swipe Right on Love

Online dating is hard no matter who you are. Having a disability could make it even harder. Run-of-the-mill dating apps like Hinge or Tinder are designed with the neurotypical and non-disabled in mind. Some of the apps’ users may act dismissive or even abusive towards people with disabilities. If you’re actively looking to spark a romantic relationship, a good first step is making sure you’re looking in places where the people will understand you.

Dateability is a dating app designed specifically for those with disabilities and chronic illnesses. With options to share details about your disability (without making it the center of your online identity), Dateability connects its users with other people who understand the ups and downs of life with a disability or chronic illness. Dateability proudly welcomes the LGBTQIA+ community as well, creating a virtual space that is firmly inclusive.

“I want to express my gratitude to Dateability for primarily giving me the gift of hope.” – Howard, Dateability user

Learn more about the Dateability app here: https://info.dateabilityapp.com/

06/12/2026

Celebrate the end of the school year with us! 🎉
Submit last day of school pics of your loved one with CdLS. We can't wait to see them!

http://CdLSFoundation.memfox.io/submityourphotos

06/11/2026

Cada familia de nuestra comunidad CdLS tiene una historia única. Algunos caminos apenas comienzan, otros abarcan muchos años, y cada experiencia es importante.

Invitamos a padres y cuidadores de todo el mundo a dedicar unos minutos para compartir su experiencia vivida a través de nuestra encuesta anual «La Voz de la Comunidad». Ya sea que su ser querido con CdLS sea niño o adulto, tenga necesidades leves o complejas, o que las pruebas genéticas hayan formado parte de su trayectoria o no, su perspectiva es fundamental.

La encuesta toma entre 5 y 10 minutos, es totalmente confidencial y puede omitir cualquier pregunta que no se sienta cómodo respondiendo.
Juntas, sus voces nos ayudan a escuchar, aprender y construir una comunidad global más conectada.

Responda la encuesta y comparta su experiencia hoy mismo: https://onh4pxyk703.typeform.com/cdlsvoc2026

06/10/2026

In preparation for Father’s Day, we invite our amazing dads in the community to share their stories to inspire others on a similar journey.

Your words can bring comfort, hope, and community to those who need it most.

Every story has the power to educate, advocate, and create meaningful connections. We invite you to share your voice because your journey matters, your love is limitless, and your story can make a difference.

Share your messages by visiting: http://CdLSFoundation.memfox.io/cdlsdads25

Address

30 Tower Lane, Suite 400
Avon, CT
06001

Opening Hours

Monday	8:30am - 5pm
Tuesday	8:30am - 5pm
Wednesday	8:30am - 5pm
Thursday	8:30am - 5pm
Friday	8:30am - 5pm

Telephone

+18007532357

Website

http://www.cdlsusa.org/

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