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For kids with rare diseases, childhood isn’t carefree—it’s clinical.
It’s often spent bouncing between doctors, tests, and treatments that leave them and their families with more questions than clarity.
They need answers, now.
Because diagnosis is power.
And theirs is long overdue.
1 IN 10
people live with a rare disease, half of them babies and children1
85%
of rare diseases are genetic2
< 5%
of rare diseases have a treatment3
30%
of children diagnosed with a rare disease don’t live to see their 5th birthday4
5
the average number of years it takes to get an accurate diagnosis5
When families are stuck in the endless loop of referrals, repeated tests, and unanswered questions, they’re in what we call a diagnostic odyssey.
So we’re working to end it for children and their families with faster, more comprehensive, and more precise genetic testing—turning guesswork into clarity, and waiting into action.
Answers in days, not years—because families shouldn’t have to wait for clarity
Fewer unnecessary tests and procedures—saving time, stress, and cost
Actionable insights for providers—to build faster, more precise care plans6
Real clarity for families—to finally move forward with confidence and support6
A diagnosis isn’t just data. It’s an answer. It’s peace of mind. It’s a plan.
Your voice can help raise awareness and bring answers to the kids who need them most.
This is just the beginning. Real change takes time, but awareness starts with conversation.
Whether you’re a caregiver, clinician, advocate, or simply someone who cares – your voice matters. Let’s shift the narrative from “mystery” to movement. From silence to strength.
Make sure your story’s heard.
References: 1. Global Genes Allies in Rare Disease. “Rare Disease Facts.” Global Genes. Accessed May 13, 2025. https://globalgenes.org/rare-disease-facts. 2. Tisdale A, et al. Orphanet J Rare Dis 16, 429 (2021). 3. https://doi.org/10.1186/s13023-021-02061-3 3. U.S. Government Accountability Office. “Rare Disease Drugs: FDA Has Steps Underway to Strengthen Coordination of Activities Supporting Drug Development.” GAO. Published November 18, 2024. Accessed May 13, 2025. https://www.gao.gov/products/gao-25-106774 4. The Lancet Global Health. Lancet Glob Health. 2024 Mar;12(3):e341. doi: 10.1016/S2214-109X(24)00056-1. 5. Marwaha S, et al. Genome Med. 2022 Feb 28;14(1):23. doi: 10.1186/s13073-022-01026-w. 6. Malinowski J, et al. Genet Med. 22, 986–1004 (2020). https://doi.org/10.1038/s41436-020-0771-z.