It’s a hard path to walk, but we want you to know that you are not alone.

Learning of a loved one’s ARID1B-RD diagnosis deeply shakes a family’s world. Diagnosis day often brings a blend of mixed emotions and a flood of questions. It’s a hard path to walk, but we want you to know that you are not alone.

Newly Diagnosed?

We have been there, too; we get it. Here you will find a worldwide community of ARID1B-RD families and experts caring for children with ARID1B-RD. We hope to provide information, connections, and resources that will help answer some of your questions and empower you for the future. We are convinced that the near future holds potential for developing disease-modifying therapies for ARID1B-RD. We live in an age where new treatments are being developed for conditions like ours. We will leave no stone unturned to accelerate treatments and improve the lives of all our incredible children.

Connect with affected patients, families, and professionals

ARID1B mutations have been identified as the predominant cause of Coffin-Siris syndrome. When you feel it is the right time, connecting with Coffin-Siris patients, their families, and professionals can be helpful. We have assembled below a list of resources.

Worldwide Parent Support Facebook groups

  • Coffin-Siris Syndrome Foundation – Home
  • Coffin-Siris Syndrome Group
  • Coffin-Siris Syndrome Moms
  • Coffin-Siris Syndrome Is Sweet
  • Coffin-Siris syndrome UK warriors
  • Coffin-Siris Syndrome Australia
  • Coffin-Siris Syndrome België - Belgique – Belgium
  • Les enfants de Coffin-Siris
  • Syndrome de Coffin-Siris

The Coffin-Siris Syndrome Foundations


When autumn comes


Connect With Us via FAR's Parent Survey

FAR's Parent Survey will allow you to join our community by providing contact information and basic information about your child's diagnosis. Through the survey, you can share with us anything you want including if and how you want to take an active role in FAR's efforts. You can complete the survey here (it takes only 3-4 minutes).


Register your Child in the Global FAR Registry - (upcoming) 

The Global FAR Registry will be the most extensive ARID1B-RD database. It will comprise genetic, developmental, and medical information about patients affected by ARID1B-RD. The ultimate goal of the registry is to support the search for meaningful therapeutics. Specifically, the registry will improve the understanding of the manifestations of ARID1B-RD and the challenges patients affected by ARID1B-RD are facing. It will also help identify the most promising clinical targets any treatment will seek to address. The registry will be essential in the FAR’s collaborations with clinicians and researchers in the academy and the industry. We cannot over-emphasize the importance of this registry in moving us towards therapeutics development. We invite you to participate in this exciting effort by registering your loved ones in the Global FAR Registry.