HNRNP Awareness Week—October 18–24, 2026 — seven days, one gene familyGet your frame
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October 18–24, 2026

HNRNP Awareness Week

Seven days. One gene family. Every HNRNP-related neurodevelopmental disorder is rare on its own. Together, they make up a community of families, researchers, and clinicians that grows every year. This week we tell that story, one gene at a time.

See the daily scheduleGet your social frame
9established HNRNP-RNDDs
~1,000cases reported worldwide
7days of awareness
HNRNP Awareness Week 2026 schedule: seven days, one gene family
The week ahead

One gene family, seven days

Each day we share short, family-friendly guides on Instagram and Facebook covering what each gene does, the features families may see, and what research is learning. Each day carries the color of its gene from our logo.

  1. Sun18
    Day 1

    Candidate genes

    HNRNPAB, HNRNPDL, PCBP1, PCBP2, PCBP3, PCBP4, HNRNPF, HNRNPH3, PTBP2, and HNRNPL. What a candidate gene is, what we know so far, and how families can help move research forward.

    Candidate genes
  2. Mon19
    Day 2

    HNRNPUL1 & HNRNPUL2

    Two genes with growing groups of families.

    HNRNPUL1HNRNPUL2
  3. Tue20
    Day 3

    HNRNPK (Au-Kline syndrome) & HNRNPR

    A master helper for other genes, and a gene that shapes growth, learning, and development.

    HNRNPKHNRNPR
  4. Wed21
    Day 4

    HNRNPH1 & HNRNPH2

    Two closely related genes, one on chromosome 5 and one on the X chromosome.

    HNRNPH1HNRNPH2
  5. Thu22
    Day 5

    HNRNPC & RBMX (aka HNRNPG)

    A disorder first described in 2023, and two disorders linked to one gene.

    HNRNPCRBMX
  6. Fri23
    Day 6

    SYNCRIP (aka HNRNPQ) & HNRNPD

    A gene that helps neurons connect, and a candidate gene with a paper in progress.

    SYNCRIPHNRNPD
  7. Sat24
    Day 7

    HNRNPU & PTBP1 (aka HNRNPI)

    The most reported HNRNP-RNDD, and the most recently described.

    HNRNPUPTBP1

Tap any graphic to download it and share it on your own feed with #HNRNPAwarenessWeek. Tag us @hnrnpfamily_foundation so we can reshare.

Show your colors

Download your social media frame

Pick the frame for your family’s gene, add your photo in the middle, and set it as your profile picture for the week. Every frame is a 1500×1500 PNG with a transparent center, so it works on Instagram, Facebook, WhatsApp, and more.

22 frames, one for every geneDownload all frames (.zip)

How to use your frame

  1. Download the frame for your gene. It saves as a PNG with a see-through center.
  2. Layer it over a photo in any free editor (Canva, Instagram Layout, or your phone’s photo app). Place your photo on the bottom and the frame on top.
  3. Post it as your profile picture or in your feed with #HNRNPAwarenessWeek and tag @hnrnpfamily_foundation.

Need help? Email info@hnrnp.org with your photo and gene and we’ll send one back ready to post.

Your voice matters

Share your family’s story

Behind every gene is a family. During Awareness Week and beyond, we want to feature real stories from our community on our YouTube channel and social media, so a parent who just heard the letters “HNRNP” for the first time can see they are not alone.

  • Short videos, interviews, written Q&As, or photos. You choose what feels right.
  • We’ll reach out personally to plan it with you. Nothing is published without your okay.
  • One shared story can reach a family still searching for a diagnosis.

Prefer email? Write to info@hnrnp.org.

I’m interested in sharing

How would you be comfortable sharing? *

We never share your contact details publicly. You can change your mind at any time.

How you can help

Every family moves research forward

Awareness is the first step. These are the places where one action this week turns into better answers for every HNRNP family.

Join the HNRNP Registry

Every family that joins helps researchers see the full picture of HNRNP-RNDDs. It takes about five minutes.

Join the Registry

Natural History Study

Take part in patient-centered research that tracks how HNRNP-RNDDs change over time and informs future treatments.

Learn about the study

Explore every HNRNP disorder

Family-friendly guides to each established HNRNP-RNDD, including features, research, and what to expect.

Browse disorders

Candidate genes

Ten hnRNP genes under active investigation and how families can help a candidate become a recognized disorder.

See candidate genes

Newly diagnosed?

A step-by-step guide for families who just received an HNRNP diagnosis, from first questions to finding community.

Start here

Support research

Gifts fund the grants that move HNRNP research forward. Every dollar goes further during Awareness Week.

Donate

Have a VUS in an hnRNP gene?

If genetic testing found a variant of uncertain significance in an hnRNP gene, it may be the cause. Contact Dr. Maddie Gillentine at maddie@hnrnp.org for guidance on next steps.

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