National Family Conference

National Family Conference brings together the broad spectrum of our diverse and dynamic community, including individuals with CdLS, their families, caregivers, medical and therapeutic professionals, volunteers and researchers.

National Family Virtual Conference 2022

Join the CdLS Foundation for a week of exciting opportunities to learn, socialize and strengthen the bonds that make the CdLS community strong.

Registration opens on May 16 and closes on June 16.

The 2022 CdLS Foundation Virtual Conference is a great learning opportunity for families; caregivers; medical educational, and therapeutic professionals; and researchers wanting to learn more about Cornelia de Lange Syndrome (CdLS) and rare disease.


Pre-Conference Workshops

Beginning on Tuesday join medical experts and researchers in gene-specific workshops to discuss specific challenges and have questions answered that your loved one may be facing. On Wednesday and Thursday, pre-conference workshops are available that address the special needs of specific segments of our CdLS community. These include families where the diagnosis of CdLS is new, families with a child transitioning out of high school, families whose primary language is Spanish, and families who have lost a family member with CdLS.



Full Conference Workshops

During the two days of the Conference, June 24-25 there will be many opportunities to hear from experts in CdLS who will provide updates, insights, and advice from the comfort of your own home.

Learn from world-renowned experts in the fields of genetics, gastrointestinal (GI) challenges, and behavioral health. You will have the ability to ask questions and receive answers in real-time. See and hear from Board Members, volunteers, staff, and other families.




Conference Selection Price
Full Conference (both days including all pre-conference workshops) $100
Friday Only $50
Saturday Only $50
Pre-Conference Workshops (à la carte) $20 each

Registration opens on May 16 and closes on June 16.

What to Expect

Attendees have an opportunity to gain knowledge on how to best care for their loved ones with CdLS and virtually meet other families facing similar challenges. Not only will attendees be better equipped to face challenges throughout their loved ones’ lives, but also leave with a sense of belonging.



Ways to Support Conference

There are many ways you can contribute to the 2022 National Family Conference. YOU can be the hero that sponsors a pre-conference workshop or help a family attend.

Question? Contact Annette Scheidecker, Development Director at or 800.753.2357, ext. 1391.