We are actively forging partnerships with many groups working on rare genetic diseases, please join us!

Our Partners

  • Rare Genomes Project logo

    Rare Genomes Project

    The Rare Genomes Project at the Broad Institute of MIT and Harvard is a patient-driven research study led by genomics experts and clinicians who believe that the latest advances in genomic sequencing are changing medicine and should be accessible to families with rare and undiagnosed conditions.

  • Boston Children's Hospital logo

    Boston Children's Hospital

    Boston Children’s Hospital a pediatric training and research hospital dedicated to improving and advancing the health and well-being of children around the world through its life-changing work in clinical care, biomedical research, medical education and community engagement.

  • Chan Zuckerberg Rare as One logo

    Chan Zuckerberg Initiative

    The Chan Zuckerberg Initiative was founded in 2015 to help solve some of society’s toughest challenges — from eradicating disease and improving education, to addressing the needs of our local communities. Our mission is to build a better future for everyone.

  • The Termeer Institute logo

    The Termeer Institute

    The Termeer Institute is a catalyst for innovation that brings life-changing treatments to patients worldwide. We support and empower brilliant life science innovators through values-driven leadership programming including mentorship, network development and thought leadership to advance groundbreaking, patient-centric solutions.

  • Every Cure logo

    Every Cure

    Every Cure is a nonprofit initiative on a mission to unlock the full potential of existing medicines to treat every disease and every patient they possibly can.

  • N=1 Collaborative logo

    N=1 Collaborative

    The N=1 Collaborative is an international network of experts working together to bring individualized treatments to rare disease patients.

  • Hugh Kaul Precision Medicine Institute logo

    Hugh Kaul Precision Medicine Institute UAB

    The Hugh Kaul Precision Medicine Institute integrates discovery and implementation to advance patient-tailored health care.

  • Global Genes logo

    Global Genes

    Global Genes is a global non-profit rare disease advocacy organization that provides patient advocates with a continuum of services to accelerate their path from early support and awareness through research.

  • Rare Kidney Disease Foundation logo

    Rare Kidney Disease Foundation

    The Rare Kidney Disease Foundation is a patient-driven, patient-focused nonprofit organization dedicated to halting the devastating impacts of ADTKD across generations by supporting physician-researchers in their quest to find a treatment and, eventually, a cure.

  • Cure Alzheimer's Fund logo

    Cure Alzheimer's Fund

    The Cure Alzheimer’s Fund is a non-profit organization dedicated to funding research with the highest probability of preventing, slowing or reversing Alzheimer’s disease.

  • CACNA1A Foundation logo

    CACNA1A Foundation

    The CACNA1A Foundation is a nonprofit working to find treatments and a cure for CACNA1A-related diseases by uniting patients, families, clinicians, and scientists to raise awareness, accelerate diagnosis, and drive research.

  • The Buffalo Initiative Logo

    The Buffalo Initiative

    The Buffalo Initiative backs the patient-led, mission-driven innovators filling critical gaps in ultra-rare drug development and builds the infrastructure they need to go further.

  • Mila's Miracle Foundation logo

    Mila's Miracle Foundation

    Mila’s Miracle Foundation is on a mission is to find and fund paths to a cure for devastating neurological conditions like Batten disease.

  • To Cure a Rose Foundation logo

    To Cure a Rose Foundation

    To Cure a Rose Foundation brings genetic treatments to children with debilitating rare diseases, many associated with autism.

  • ZTTK SON-Shine Foundation logo

    ZTTK SON-Shine Foundation

    The ZTTK SON-Shine Foundation is committed to improving the lives of individuals with ZTTK by accelerating research to develop accessible and effective treatments and, ultimately, a cure.