04/15/2026
Turning Hope into Action: Join the HNRNPH2 Baseline Study! 🌹
The To Cure a Rose (TCAR) Foundation is launching a groundbreaking, decentralized baseline study for HNRNPH2-related disorders, and your family's participation is crucial!
What You Need to Know:
The Goal: To capture detailed data on daily functioning, motor skills, and behavior using at-home tools (like lightweight sensors and a secure video app). This is vital to understand the disorder and develop reliable measures for future treatment trials.
Path to Treatment: We are developing an A*O treatment and plan to start a clinical trial when we have enough patient data. This baseline study is a prerequisite for every patient to be considered a candidate for a potential upcoming clinical trial.
Low Burden: Most activities are done right from home, plus two (2) one-day clinic visits.
Privacy First: The study is IRB-approved, and only de-identified data will be shared with global researchers to accelerate therapies.
Your child's participation brings us one step closer to a future where our children can thrive. Join us in building a sustainable path for all ultra rare genetic conditions.
➡ Ready to take the next step?
Visit our Study Page https://www.citizen.health/ai-advocate/to-cure-a-rose-foundation to enroll.
Or contact Dr. Huiping Zhu for more information:
📧 Email: [email protected]
📞 Phone: 281-323-0073
*O
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