To Cure A Rose

07/14/2026

For all you binge watchers, Amazon Prime just released a new documentary, featuring Rosie and I, called RARE: A Rare Revolution.

Check it out, it's worth the watch. Lainey Mosley and the team did a fantastic job. You can see the beginning of our journey, and how close we are to a treatment and a system to scale them.

https://www.amazon.com/dp/B0H1QX3GKH?lv=shuf&channelId=500&plpRedirect=mhFallback

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

Transform hours of medical paperwork into instant answers with Citizen Health's AI Advocate. Built by rare disease families, for rare disease families, get answers to your questions about medications, treatments, and care coordination for rare diseases. Trusted by 50+ patient advocacy groups.

04/09/2026

In order to scale genetic medicines for the millions of patients, with the thousands of diseases that need treatment, we must be able to do clinical trials differently. Each patient as their own control allows us to usher in personalized therapeutics safely and effectively at scale.

In partnership with Citizen Health, Sysnav Syde, AlphaRose, and To Cure a Rose Foundation - we've developed a platform to do just that.

Read more here:
www.tocurearose.org/nhs

*O

04/07/2026

Genetic medicine is changing how we treat disease. How we track patients must change as well. Check out how we're establishing a digital twin of each HNRNPH2 patient. We hope this will be a platform for many other neurological diseases for faster trials, and better treatments!!

Learn more how you can get involved if your a H2 family, or donate to help!

www.tocurearose.org/nhs

*O

03/31/2026

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

03/26/2026

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

03/25/2026

We just launched a decentralized modern day natural history study platform for ultra rare neurological diseases.

Go to www.tocurearose.org/nhs to learn about how we're changing how we do clinical trials, and how HNRNPH2 families are leading the charge!