THE BURDEN
Rare disease changes a family’s life in three distinct ways:
The problem is not only finding the diagnosis. It is the years spent searching, the limited availability of disease-specific treatments, and the burden of managing a complex condition with too little support.
Time to diagnosis
Many families spend five years or longer seeking an accurate rare-disease diagnosis, moving between specialists, tests, and unanswered questions.
No FDA-approved therapy
For most rare diseases, getting a name for the condition does not mean there is a disease-specific drug waiting on the other side.
Caregivers feel alone
More than half of caregivers surveyed in the 2018 Rare Disease Caregiving in America study reported feeling alone.
Louisiana is choosing to believe in its rural communities — and invest in what they can become.
Louisiana is backing new ways to bring answers, care, and support closer to rural families. Jura Health is grateful to the state leaders who are investing in their communities and giving local families a better chance to be seen, diagnosed, and supported.
THIS POTENTIAL IMPACT ON LIVES IS SIGNIFICANT
THE ECONOMIC COST
Nearly $1 trillion in one year. Across just 379 rare diseases.
A peer-reviewed U.S. study estimated the 2019 economic burden of 379 rare diseases at $997 billion. That estimate included healthcare spending, lost productivity, non-medical costs, and healthcare costs not covered by insurance.
TOTAL U.S. ECONOMIC BURDEN
379 rare diseases. One year.
There are more than 10,000 known rare diseases. The published analysis measured only a fraction of them, making the scale of the burden especially striking.
45% of total
44% of total
7% of total
4% of total
WHY GRANTS MATTER
Grant funding can change where answers and support are available.
Jura’s grant work is focused on expanding access for communities that are often the last to benefit from specialty genetics, precision diagnostics, and coordinated support.
Bring comprehensive diagnostics closer to patients.
Reduce the dependence on distant specialty centers by making testing, genetic counseling, and clinical coordination accessible through local providers and virtual support.
Turn a result into clear next steps.
A diagnosis should lead somewhere. Jura helps organize specialist options, advocacy resources, research opportunities, covered services, and practical next actions for families and clinicians.
Address the barriers medicine alone cannot solve.
Transportation, scheduling, benefits, caregiver strain, and community connection all shape outcomes. Grant-funded partnerships can bring these supports into the same model.
Confirmed grant announcements
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WHAT WE ARE BUILDING
Answers matter. What happens next matters just as much.
Jura Health combines rare-disease genetics with genetic counseling, practical next steps, and navigation designed to help patients, families, and clinicians move forward with a plan.
Learn more about Jura HealthHOW ARE WE DOING THIS?
Bring the right families to answers sooner — then help them act on what we find.
The model is designed to work through trusted local providers while adding the genetics, navigation, and community support that rural families often cannot access close to home.
Find families who may benefit.
Local clinicians and community partners identify children with epilepsy, intellectual or developmental disability, or unresolved complex needs.
Bring comprehensive genetics closer.
Jura coordinates clinical intake, whole genome sequencing when indicated, and genetic counseling without requiring a family to start at a distant specialty center.
Turn results into next steps.
Families and clinicians receive practical guidance on specialists, services, advocacy resources, treatment considerations, and research options.
Help families follow through.
Navigation and community partnerships address barriers such as transportation, scheduling, benefits, caregiver strain, and connection to local support.
Who this program is for
- Children and young adults ages 0–21 living in eligible rural Louisiana communities.
- Epilepsy, intellectual disability, developmental delay, or another unexplained complex neurodevelopmental presentation.
- Families who could benefit from genomic evaluation and a coordinated follow-through plan.
- Participation through a local clinical provider; final eligibility is confirmed during intake.
TAKE THE NEXT STEP
Questions about the program?
Families, local clinicians, and community partners can contact Jura Health to discuss the program and next steps.
Sources and data notes
- NORD: Rare Disease Facts and Statistics — more than 30 million Americans live with rare disease; diagnosis can take five or more years on average.
- Nijim et al., Rare Disease Drug Repurposing, JAMA Network Open (2025) — cites an estimate that 95% of rare diseases lack an FDA-approved therapy.
- National Alliance for Caregiving, Rare Disease Caregiving in America: 53% of rare-disease caregivers reported feeling alone.
- HRSA Rural Health Grants Eligibility Analyzer — check rural designation by address. Rural designation alone does not establish eligibility for this program.
- Yang et al., The national economic burden of rare disease in the United States in 2019 (2022) — total 2019 U.S. economic burden of 379 rare diseases estimated at $997B, including $449B direct medical, $437B indirect, $73B non-medical, and $38B uncovered healthcare costs.