To Cure A Rose
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Hope is not a wish. It’s a plan.
At To Cure A Rose Foundation, we’re on a mission to make genetic treatments faster, more affordable, and within reach—so that the next child born with a rare disease can receive a customized drug within days of diagnosis.
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
Your Personalized HNRNPH2 AI Advocate | Citizen Health - Get instant answers from every detail of your medical history - all at your fingertips 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
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!
12/30/2025
Rosie and I were thinking about 2026 today and noticed that we are behind on our end of year campaign!!!
Get that last “tax write off” before the new year! Please donate towards our clinical trial preparations for 2026.. let’s give the Roses their voice back!!!
https://app.betterunite.com/tocurearose-hopehasatimelinefuelthefightfor2026
2025 was an incredible year. We're closer than ever to making an impact with a treatment on not just Rose, but all children with HNRNPH2. We've built systems, labs, and a company to help usher in a scalable model for rare genetic disease drug development.
We did all this because you stepped up and donated to our mission. THANK YOU!!!!!
Time is not our friend, and more now than ever, we need to urgently get Rosiphersen into a clinical trial.
Hope has a timeline: Fuel the Fight for 2026. Will you consider giving an early holiday end of year gift for the Roses?
Let's keep up the fight!!
Donate Here Today: https://app.betterunite.com/tocurearose-hopehasatimelinefuelthefightfor2026
11/19/2025
🎾📢 A big shoutout to Caven Dental Group for rallying with us as a Match Point Sponsor at Rally for Rare! Your support helps bring hope and breakthrough genetic treatments to children with rare diseases. 💚
For more info on Rally for Rare, please visit: app.betterunite.com/tocurearose-2026rallyforrare
Click here to claim your Sponsored Listing.