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. https://www.cerebranetwork.com/beond
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!
GENETIC ALLIANCE UK
Genetic Alliance UK is the largest alliance of organizations supporting people with genetic, rare and undiagnosed conditions in the UK. Its members and the people they support are at the heart of everything they do. Genetic Alliance UK advocates for fast and accurate diagnosis, good quality care and access to the best treatments. The organization actively supports progress in research and engages with decision makers and the public about the challenges faced by the rare disease community. Genetic UK runs two long standing projects, Rare Disease UK and SWAN UK (syndromes without a name).
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. https://kbgsindrome.org/
BEYOND THE DIAGNOSIS
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. https://www.beyondthediagnosis.org/
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. https://www.simonssearchlight.org/
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. www.rareundiagnosed.org
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. https://www.feedingtubeawareness.org/
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.