Registration deadline approaching for Family Conference

The 2022 Kleefstra Syndrome Family Conference is a bit later this summer, but the May 15 registration deadline is quickly approaching. 

The conference will be held from June 23-25 at the DoubleTree Hotel in Naperville, Ill. (about 20 miles SW of Chicago O’Hare Airport). The conference will focus on practical education and tips for families raising children and adults with KS.

Zoë Frazier and Dr. Tamar Katz from the Kleefstra Clinic at Boston Children's Hospital will be attending in person, while Dr. Siddharth Srivastava from the Kleefstra Clinic will join us virtually, and Dr. Karlijn Vermeulen of Radboud University Medical Center’s Department of Human Genetics will be presenting a virtual keynote address on regression.

 The topics to be covered in the different breakout sessions are:



GI symptoms in KS, other disorders to get candid analysis

We know that gastrointestinal disorders (GI) disorders are common in people with Kleefstra Syndrome and can significantly impact quality of life. That’s why IDefine is sponsoring a new consortium called CANDID – Consortium for Autism, Neurodevelopmental Disorders & Digestive Diseases. The name reflects the often-candid conversations families have around GI symptoms.  

CANDID – a multidisciplinary collaboration of researchers, medical professionals, and patient advocacy groupsis currently focused on collecting patient data, hosting a conference, and developing long-term working groups to tackle the issues that come out of the data and conference.

“Families list GI disorders as one of their top concerns,” said Kate Still, scientific director Phelan-McDermid Syndrome Foundation. “These symptoms can be very disruptive to everyday life and quality of life, including things like cyclic vomiting, diarrhea, constipation and reflux.”

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It Takes a Village Returns

It Takes a Village, the popular webinar series is coming back bigger and better than ever.

In an effort to leverage resources and take advantage of synergies, the patient advocacy groups IDefine,  Koolen-de Vries Syndrome Foundation, and  SETBP1 Society are teaming up to soon offer new programs on the first Saturday of the month.

It Takes a Village is a program full of useful, interesting, and fun events for families, caregivers and children diagnosed with the three rare genetic disorders. Program topics will be driven by what families want. Potential programs will likely include musical therapy, social interactions, and relevant topics such as individualized education programs (IEP).

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Quick Clips on Kleefstra

  • The Kleefstra Worldwide Map: Where in the world are we?  Participate in this worldwide effort to build an accurate census for our community!

  • Southern Roots: A BBQ Reunion:  Join us April 30 in the South Carolina sun for delicious BBQ bites, live music, libations, great company and experience the joy of coming together as a KS community for an amazing cause. 

  • Stay in Touch: We are thrilled that you are reading our monthly newsletter!  Stay in tune with all the latest and greatest updates related to Kleefstra Syndrome and the IDefine community by following us on Facebook and Instagram.  Help us get to 1,000 followers!

  • KleefSTAR: Are you interested in seeing your loved one recognized for how amazing he/she is?  Please send in a photo along with 5 fun and/or interesting facts about your KleefSTAR!  Email us at the address below!


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