It Takes a Village – Rare Community Synergy

Austin, TX — April 24, 2022 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 offer a webinar series called It Takes a Village on the first Saturday of the month.

It Takes a Village will be 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, sensory processing, and individualized education programs (IEP).

“As a volunteer-based non-profit supporting an ultra-rare community, we find that our resources, understanding of the disorder, and funding remain limited,” said Haley Oyler, president of SETBP1 Society. “We direct a high percentage of our collected funds towards research to better understand the impact of SETBP1-HD, the impacted pathways, and to bring us closer to finding targeted treatments. This results in our organization functioning on a tight budget with a small team. By partnering with other rare disorder groups, we combine forces and expand the size of the team working on the shared projects.”

Although the programs are held live, the goal is to create a shared library of interactive educational content that each organization can offer on its website.

“The KdVS community is filled with an amazing open-network of families,” said Ashley Fortney Point, Koolen-de Vries Syndrome Foundation president. “We are just waiting for the team of researchers to find therapeutics to improve the lives of all individuals living with KdVS. Through this partnership, we can pull from each community’s knowledge-base to learn more and grow together. When one of us progresses, we all win!”

For more information about the SETBP1 Society: https://www.setbp1.org

Learn more about IDefine: https://www.idefine.org/

Learn more about Koolen-de Vries Syndrome Foundation: https://kdvsfoundation.org/

Check out Upcoming It Takes a Village webinars: https://setbp1.org/events/