Family Resources
Find out more about HNRNPH2 and related neurodevelopmental disorders!
HNRNPH2 Foundations
The Yellow Brick Road Project
The Yellow Brick Road Project is a nonprofit foundation supporting research, awareness, and community for individuals and families affected by HNRNPH2-related neurodevelopmental disorders. Its mission is to accelerate understanding, treatment, and hope for those impacted by this rare genetic condition. Learn more here.
HNRNP Family Foundation
The HNRNP Family Foundation is a nonprofit dedicated to improving the lives of people and families affected by HNRNP-Related Neurodevelopmental Disorders by driving patient-centered research, fostering education, and building a supportive, neurodiverse-affirming community. Learn more here.
To Cure a Rose
To Cure A Rose Foundation is a nonprofit dedicated to developing genetic treatments and support for children affected by HNRNPH2 and other ultra-rare genetic diseases. Its mission is to accelerate research, awareness, and therapeutic innovation so families like Rose’s have real hope for better outcomes. Learn more here.
Other Patient Advocacy Groups
CureGRIN
CureGRIN Foundation is a parent-led nonprofit organization dedicated to improving the lives of people and families affected by GRI Disorders (caused by variants in GRIN, GRIA, GRID and GRIK genes) by driving research, education, and collaboration toward effective treatments and cures. Learn more here.
GRIN2B
The GRIN2B Foundation is a parent‑run nonprofit advancing research, awareness, and support for families affected by GRIN2B‑Related Neurodevelopmental Disorder. Its mission is to foster community, fund scientific progress, and empower individuals and caregivers impacted by this rare genetic condition. Learn more here.
The DAND Alliance
The DAND Alliance is a nonprofit dedicated to research, awareness, and support for individuals and families affected by DEAF1-Associated Neurodevelopmental Disorders. Its mission is to advance understanding and improve outcomes for those living with this rare genetic condition. Learn more here.
ZTTK
ZTTK SON-Shine Foundation is a nonprofit organization dedicated to supporting families affected by Zhu-Tokita-Takenouchi-Kim (ZTTK) syndrome, an ultra-rare genetic neurodevelopmental disorder. The foundation funds scientific research, builds support networks, raises global awareness, and connects caregivers and medical professionals to accelerate progress toward treatments and improved care. Learn more here.
MED13L
The MED13L Foundation focuses on empowering families and clinicians dealing with MED13L syndrome, a rare genetic developmental condition. The organization provides information on diagnosis, symptoms, research, and care strategies while working to increase awareness and support research that enhances understanding and outcomes for individuals with this complex genetic disorder. Learn more here.
CTNNB1 Connect and Cure
CTNNB1 Connect & Cure is a nonprofit committed to funding research into CTNNB1 Syndrome, a rare neurodevelopmental disorder caused by variations in the CTNNB1 gene. The organization raises awareness, connects families, supports research initiatives and natural history studies, and works toward developing effective treatments and ultimately a cure while fostering a community for affected individuals. Learn more here.
Rare Disease Resources
n-Lorem
n-Lorem Foundation is a nonprofit that develops and provides personalized experimental antisense oligonucleotide (ASO) medicines to treat individuals with ultra-rare “nano-rare” genetic diseases — offering these bespoke treatments charitably, for free and for life. Learn more here.
Rare Genomics Institute
Rare Genomics Institute is a nonprofit organization that helps patients and families affected by rare diseases access genetic sequencing, research tools, and expert support to better understand and ultimately find treatments for their conditions. Learn more here.
One Rare
One Rare is a nonprofit organization dedicated to improving the lives of young adults (ages 18–35) living with rare diseases by providing education, mentoring, recreation, and peer support to help them thrive in adulthood. Learn more here.
NORD
The National Organization for Rare Disorders (NORD) advocates for individuals with rare diseases and their families by providing disease information, patient assistance programs, research support, and policy engagement. NORD’s resources include educational materials, treatment guidance, and connections to research initiatives to improve diagnosis, care, and access to therapies for rare disease communities. Learn more here.
Autism Resources
Autism Speaks
Autism Speaks advocates for individuals with autism and their families by funding research, increasing awareness, and providing tools and resources to support diagnosis, intervention, and community inclusion. The organization offers educational materials, services navigation, and initiatives aimed at improving quality of life and opportunities across the lifespan. Learn more here.
Autism Society
Autism Society strengthens community connections and improves lives by providing trusted information, advocacy, and support for individuals with autism and their families. The organization offers resources on education, services, local support networks, and public policy efforts aimed at promoting acceptance, inclusion, and meaningful participation in all stages of life. Learn more here.
Autism Science Foundation
Autism Science Foundation supports and advances scientific research on autism by funding studies, promoting evidence-based information, and connecting researchers with families. The organization focuses on increasing understanding of autism biology, improving interventions, and accelerating discoveries that lead to better outcomes for individuals on the autism spectrum. Learn more here.
Epilepsy Resources
The Epilepsy Foundation
The Epilepsy Foundation advances education, advocacy, research, and direct support for people living with epilepsy and seizure disorders. The organization delivers medical information, seizure first-aid guidance, community programs, and policy initiatives designed to improve access to care and long-term outcomes. Learn more here.
The Anita Kaufmann Foundation
The Anita Kaufmann Foundation leads year-round epilepsy awareness and advocacy through its Purple Day Every Day campaign. The foundation promotes public education, stigma reduction, seizure first-aid training, and community engagement efforts that strengthen visibility and support for individuals affected by epilepsy. Learn more here.
Rett Resources
The International Rett Syndrome Foundation
The International Rett Syndrome Foundation accelerates research toward transformative treatments for Rett syndrome while connecting families with trusted resources, support services, and clinical trial information. The organization prioritizes scientific progress collaboration across the research community that advances understanding of this rare neurodevelopmental disorder. Learn more here.
Rett Syndrome Research Trust
Rett Syndrome Research Trust is dedicated to changing the trajectory of Rett syndrome by supporting high-impact research, facilitating natural history studies, and amplifying the voices of the global Rett community. The organization provides information on emerging science, promotes clinical trial access, and fosters connections among families, researchers, and clinicians to accelerate therapeutic breakthroughs. Learn more here.
Cerebral Palsy Resouces
United Cerebral Palsy
United Cerebral Palsy promotes independence and inclusion for people with cerebral palsy and other disabilities by advancing advocacy, research, and community-based services through a nationwide network of affiliates. The organization connects individuals and families with essential resources, support programs, and opportunities that foster accessibility, employment, and full participation in society. Learn more here.
Cerebral Palsy Research Network
The Cerebral Palsy Research Network advances patient-centered research to improve lifelong health outcomes for people with cerebral palsy while connecting clinicians, researchers, and families through collaborative data sharing and community engagement. The organization prioritizes high-quality research, education, and real-world clinical insights to develop evidence-based treatments and enhance quality of life for individuals with this condition. Learn more here.
Other Resources
Courageous Parents Network
Courageous Parents Network provides guidance, tools, and community to help parents navigate the toughest decisions and emotional challenges of caring for seriously ill children. The organization offers expert-led videos, narratives from other families, and practical resources to support informed caregiving and strengthen connection within families facing pediatric life-limiting conditions. Learn more here.