HNRNP Family Foundation

10/19/2026

🧬 HNRNP Awareness Week | Day 2: Meet HNRNPUL1

What happens when researchers identify a genetic change but are still working to understand its full impact?

HNRNPUL1 is a candidate gene currently under investigation for its potential connection to neurodevelopmental disorders. Approximately 10 individuals with likely damaging variants have been reported, each helping researchers build a clearer picture of this emerging condition.

For families navigating an uncertain diagnosis, every discovery matters.

Swipe to learn what we know about HNRNPUL1, why its candidate gene status matters, and how research continues to move forward.

Learn more, join our registry, or support ongoing research at the link in bio.

10/18/2026

It’s HNRNP Awareness Week! 🌈

So what exactly are HNRNP-Related Neurodevelopmental Disorders (HNRNP-RNDDs), and why is understanding them so important? 🧬

HNRNP-RNDDs are a group of rare genetic conditions that can affect development, learning, communication, and other aspects of daily life.

While every individual’s experience is unique, awareness and education are essential to building understanding, advancing research, and supporting affected families.

Help us spread awareness by sharing this video and learning more about HNRNP-RNDDs at HNRNP.org

10/18/2026

🌈 HNRNP Awareness Week | Day 1: Candidate Genes

Every recognized rare disorder starts somewhere. For some families, that journey begins with a gene that researchers are still working to understand.

Today and throughout this week, we’re highlighting HNRNP candidate genes under active investigation and the importance of connecting families, identifying shared experiences, and advancing research.

A candidate gene may hold important clues about a neurodevelopmental condition, but more evidence is needed before an official disorder can be established.

That’s where our community makes a difference.

Every family identified, every story shared, and every contribution to research brings us one step closer to answers.

Swipe through to learn about these 10 genes, what researchers have discovered so far, and how you can help move research forward.

Learn more, join our registry, or support ongoing research through donation or study participation at https://hnrnp.org/

Stay tuned and look out for our daily posts this week as we raise awareness on HNRNP-RNDDs ❤️🧡💛💚💙💜

09/29/2026

How can a change in a single gene affect neurological development?

The answer starts with understanding how our genetic instructions become the proteins our cells rely on.

DNA stores our genetic information. RNA helps cells access and process those instructions. Genes provide specific instructions for making proteins, and those proteins perform essential jobs throughout the body, including processes important to brain development.

For HNRNP-RNDDs, changes in certain HNRNP genes can affect how hnRNP proteins are made or function. When those proteins don’t work as expected, processes involved in brain and body development can be disrupted.

Understanding this pathway helps us better understand the biology behind HNRNP-related neurodevelopmental disorders and why continued research matters.

Swipe through to follow the science from DNA → RNA → genes → proteins → brain development → HNRNP-RNDDs.

Learn more about HNRNP-RNDDs, ongoing research, and our community at the link in bio.

09/18/2026

09/15/2026

What happens when pediatric care ends, but the need for support doesn’t?

On Friday, September 25 at 10amPT / 1pmET, the HNRNP Family Foundation is partnering with the Rare Epilepsy Network (REN) and Genetic Epilepsy in Adults Network (GEAN) for Rare Epilepsies & Adults: Breaking Barriers, a stakeholder meeting bringing together families, clinicians, researchers, advocates and industry.

To open the meeting, Lori from the HNRNP Family Foundation will share her family’s lived experience, helping ground the conversation in the realities families face as their loved ones with rare epilepsy grow into adulthood.

The meeting will explore challenges including transitioning from pediatric to adult healthcare, finding knowledgeable providers, managing epilepsy long-term, accessing adult services and supporting independence and quality of life.

For HNRNP-RNDD families, these conversations matter. Lived experience belongs at the table alongside clinical expertise and research.

Registration is required. Sign up via QR code or here: https://zoom.us/meeting/register/s0FFqG6rSRqPwv4QXhMk5w #/registration

09/15/2026

For families navigating a rare diagnosis, finding someone who truly understands can change everything.

Before finding the HNRNP community, Catherine joined groups for Angelman syndrome and other rare disorders that shared or mimicked some of the symptoms her son Harrison was experiencing. There were pieces that felt familiar, but Catherine still couldn't help feeling out of place, despite the wonderful support of those groups, too.

Finding other HNRNP families changed that. Suddenly, there were parents who understood the specific questions, challenges, and experiences their family was navigating. As Catherine shares, there was less questioning, “Do we belong?”

That’s the power of finding your rare disease and disorder community. Every child’s journey is unique, but connecting with families who have walked a similar path can bring understanding, shared knowledge, and a sense of belonging that is hard to find anywhere else.

Learn more and connect with the HNRNP community at HNRNP.org.

09/02/2026

When Catherine’s son, Harrison, was diagnosed with HNRNPU, she found herself navigating a world of questions, information, and unknowns. Her advice for families?

1. Google can help, but it can also hurt. Be mindful of what you read and how much you consume.

2. Remember that no two children with an HNRNP-RNDD will present exactly the same.

3. For Catherine, some of the most valuable guidance has come from other parents and families who understand what it’s like to live with a rare diagnosis every day. Their experiences can offer insight, reassurance, and practical advice that isn’t always found in a doctor’s office.

4. And one reminder she hopes every parent carries with them: You are your child’s best advocate.

Harrison’s journey is uniquely his, just as every child’s journey is their own. But by sharing our experiences, asking questions, and learning from one another, no family has to navigate that journey alone.

Learn more and connect with the HNRNP community at HNRNP.org

Want to share your story? Reach out to Lori at [email protected] 📧

08/19/2026

Standing with our sister organzation Yellow Brick Road Project - YBRP, Inc. in grief today.

There are no words to express the heartbreak we feel over the loss of sweet Alice.

Though her time here was far too short, her life touched so many, and her impact on our HNRNPH2 community will never fade.

We hold Alice’s family close in our hearts and surround them with love and strength during this unimaginable time.

Alice will always be part of our H2 family and forever in our hearts. 💛

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.