Recently Diagnosed? Feeling Rare?

Patient Resources

At RareDNA Foundation, we understand how overwhelming it can feel to face a rare genetic diagnosis. Finding reliable information, supportive communities, and access to expert care can make all the difference.
We’ve gathered trusted organizations that provide education, advocacy, and direct support for individuals and families navigating rare genetic and mitochondrial conditions.

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Featured Organizations

National Organization for Rare Disorders (NORD)

NORD is a leader in rare disease awareness, research, and advocacy. They offer patient assistance programs, information on clinical trials, and connections to hundreds of rare disease organizations.
🔗 rarediseases.org

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EveryLife Foundation for Rare Diseases

EveryLife Foundation focuses on advancing science-driven policies to accelerate treatments and expand access to diagnosis and care. They also empower patients to become advocates through legislative action.
🔗 everylifefoundation.org

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United Mitochondrial Disease Foundation (UMDF)

UMDF provides support, education, and research funding for mitochondrial diseases. They connect patients with medical experts, community events, and up-to-date treatment information.
🔗 umdf.org

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Global Genes

Global Genes unites the rare disease community worldwide, offering resources, toolkits, and patient stories that inspire and educate. They also provide valuable guidance on advocacy and research involvement.
🔗 globalgenes.org

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Genetic and Rare Diseases Information Center (GARD)

GARD is a program of the National Center for Advancing Translational Sciences (NCATS) and provides reliable, science-based information on thousands of rare and genetic diseases. Their team helps patients, families, and health professionals find trustworthy resources, learn about current research, and connect with rare disease organizations.
🔗 rarediseases.info.nih.gov

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Heart of PPA2

Heart of PPA2 is a nonprofit organization dedicated to raising awareness and supporting families impacted by PPA2 deficiency, a rare genetic disorder that affects mitochondrial energy production and heart function. The organization connects patients, caregivers, and medical professionals to critical information, shares real-life stories to inspire awareness, and advocates for earlier diagnosis and better understanding of PPA2-related heart conditions. Through education, research support, and collaboration, Heart of PPA2 is building a community of hope for those living with this rare mitochondrial disease.
🔗 heartofppa2.org

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Children’s Cardiomyopathy Foundation (CCF)

CCF is dedicated to supporting children and families affected by cardiomyopathy, a serious heart condition that can be genetic or mitochondrial in origin. They fund research, raise awareness, and provide education to improve diagnosis and treatment for pediatric patients.
🔗 childrenscardiomyopathy.org

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Minnesota Rare Disease Advisory Council (MNRDAC)

MNRDAC is a state-level council that works to improve the lives of people in Minnesota living with rare diseases. They bring together patients, caregivers, healthcare providers, and policymakers to address barriers in diagnosis, care, and treatment access while promoting local advocacy and awareness.
🔗 mnraredisease.org