HNRNP Family Foundation

HNRNP Family Foundation A Rare Neurodevelopment Disorder Non-Profit
hnrnp.org

A fantastic practical resource for our families who are newly diagnosed and wondering where to start . Or families who a...
05/28/2026

A fantastic practical resource for our families who are newly diagnosed and wondering where to start . Or families who are looking to understand cell and therapies options more thoroughly.

We are delighted to announce the launch of Genes, Brains, and Breakthroughs — a new public awareness campaign from the Department of Paediatrics at the University of Oxford.

You can now watch a fantastic set of videos aimed not only to support affected families, but also to improve wider public understanding, reduce stigma, and encourage more inclusive conversations around neurodevelopmental disorders and therapeutic genomics.

The project was shaped directly by the experiences and questions of parents and carers, helping to ensure the resources are clear, compassionate, and meaningful for families navigating rare genetic conditions.

⏯️ https://www.youtube.com/

A huge thank you to all the families and advocacy groups who generously shared their experiences and expertise to make this project possible, including FamilieSCN2A, GRI-UK, SLC6A1-Connect-UK, and Unique.

Developed in collaboration with families, researchers, clinicians, and advocacy organisations, the campaign features a series of accessible animated videos designed to improve understanding of neurodevelopmental disorders, genetics, and emerging therapeutic approaches.

The campaign was funded by the University of Oxford’s Public and Community Engagement with Research (PCER) Fund and the MRC Centre of Research Excellence in Therapeutic Genomics.

The SYNCRIP-RNDD GeneReviews is LIVE! Exciting to be able to give patients the resources for their clinicians!
05/22/2026

The SYNCRIP-RNDD GeneReviews is LIVE! Exciting to be able to give patients the resources for their clinicians!

04/28/2026

A special message from Meena Balasubramanian inviting our global community to Sheffield for the 2026 International HNRNP Gene Family & Research Summit.

Join families, clinicians, and researchers as we come together to share knowledge, build connections, and drive progress for HNRNP-related neurodevelopmental disorders.

Registration and childcare close April 30. Space is filling quickly.

Register now: hnrnp.org/events

Final call to join us in Sheffield 🇬🇧Registration for the 2026 International HNRNP Gene Family & Research Summit closes ...
04/27/2026

Final call to join us in Sheffield 🇬🇧

Registration for the 2026 International HNRNP Gene Family & Research Summit closes April 30 and space is filling quickly. This is your opportunity to connect with families, researchers, and clinicians from around the world all working toward a shared future for our community.

Childcare will be available during the meeting. If you plan to utilize it, please complete the form here:
https://docs.google.com/forms/d/e/1FAIpQLSeawIUAvrvpl-NqtkPQwzyuGEKg1L_UZyzvwBsYjGpx5-sO4g/viewform

Register now before it closes:
www.hnrnp.org/events

Join us for a delicious way to give back!Stop by Hot Box in Athens on Thursday, April 30 from 5–8 PM and 15% of your pur...
04/22/2026

Join us for a delicious way to give back!
Stop by Hot Box in Athens on Thursday, April 30 from 5–8 PM and 15% of your purchase will support the HNRNP Family Foundation.
📍 74 N. Court St., Athens, OH 45701
Grab dinner, bring a friend, and help fund research for our community.

Speaker Spotlight: Leila Margolis, co founder and President of the HNRNP Family Foundation. In Sheffield, Leila will sha...
04/22/2026

Speaker Spotlight: Leila Margolis, co founder and President of the HNRNP Family Foundation. In Sheffield, Leila will share the foundation’s vision, therapeutics basics, and building the UK HNRNP-RNDD community. Her leadership continues to help turn hope into action.

We’re pleased to spotlight Dr. Sarah Wynn, who will present on partnering for progress in rare conditions. Her work high...
04/22/2026

We’re pleased to spotlight Dr. Sarah Wynn, who will present on partnering for progress in rare conditions. Her work highlights the power of collaboration, advocacy, and building stronger pathways forward together.

🌐 www.rarechromo.org

Speaker Spotlight: Dr. Christopher Ricupero. From biobanking to biomarker discovery and future therapeutics, Dr. Ricuper...
04/21/2026

Speaker Spotlight: Dr. Christopher Ricupero. From biobanking to biomarker discovery and future therapeutics, Dr. Ricupero’s work is helping build critical infrastructure for progress. We look forward to his sessions in Sheffield.

We’re excited to feature Dr. Billie Au, whose work in neurodevelopmental disorders and natural history research is helpi...
04/21/2026

We’re excited to feature Dr. Billie Au, whose work in neurodevelopmental disorders and natural history research is helping expand understanding across the HNRNP gene family. In Sheffield, she will share insights on HNRNPK natural history and more.

Speaker Spotlight: Prof. Dr. Meena Balasubramanian. A pioneering leader in HNRNPU research, Dr. Meena will present on na...
04/20/2026

Speaker Spotlight: Prof. Dr. Meena Balasubramanian. A pioneering leader in HNRNPU research, Dr. Meena will present on natural history, future therapeutics, and advancing what is possible for rare neurodevelopmental disorders. Her work continues to help move the field forward.

We’re honored to spotlight Dr. Maddie Gillentine, Scientific Director of the HNRNP Family Foundation, whose work has hel...
04/20/2026

We’re honored to spotlight Dr. Maddie Gillentine, Scientific Director of the HNRNP Family Foundation, whose work has helped shape the HNRNP field from the beginning. In Sheffield, she will share insights on HNRNP-RNDD 101, the research roadmap, natural history, and more. Her sessions will help connect science, strategy, and what it means for families.

Address

Athens, OH
45701

Alerts

Be the first to know and let us send you an email when HNRNP Family Foundation posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Organization

Send a message to HNRNP Family Foundation:

Share