By partnering with other organizations and groups, we can better get the word out about KBG Syndrome, what to look for and what other conditions may apply. In turn, we can help these organizations get the recognition they deserve and build a stronger rare disease and health support network! Visit our partners and show them some love!

Let's Be Partners!

Asociación Española Síndrome de KBG

We are an association that was founded in Spain in 4/2021 to provide information and
support to Spanish speaking KBG families in both Spain as well as Central and South
America. We currently have a family of 64 members and are growing quickly. We are
working to increase awareness of KBG by medical professionals as well as in the
general society.


Beyond the Diagnosis unites art and science to raise awareness, educate, and inspire research and innovation of treatments for children living with rare and neglected diseases.

Simons Searchlight!

An online community that supports families with rare genetic changes (also called “genomic variants”) associated with features of autism and developmental delay. We provide access to resources, information, and family support. Simons VIP also provides an opportunity for families to participate in research.

Rare and Undiagnosed Network

We're a group of advocates, patients, families, researchers, and healthcare providers who share the same mission and vision: to bring genome sequencing into clinical practice to help undiagnosed patients better understand these conditions – and to join together as we improve the lives for all those affected.

Feeding Tube Awareness Foundation

Feeding Tube Awareness was founded in 2010 to support parents of children who are tube-fed, while raising positive awareness of tube feeding as a lifesaving medical intervention. They  are a 501(c)(3) charitable organization run 100% by exceptional parent volunteers who combine their personal experience and professional knowledge.​

Our Partners


The BEOND study is a survey for parents and caregivers of children and adults with rare genetic syndromes and neurodevelopmental disorders. We will be launching the survey in early 2022.