May 2025 Newsletter

Dear ReNU Syndrome United Community,

We are excited to announce that the theme of the Scientific Symposium portion of our upcoming Family Conference in New York is going to focus on building a Research Roadmap!

We are working globally with scientists and researchers on the next steps to advance our understanding and treatment of ReNU Syndrome. There are many ways that YOU can help POWER THE RESEARCH FORWARD!

If you’re wondering where to begin and how you can help here are some critical next steps:

  • Create a CRID for every ReNU patient - https://thecrid.org/

    • Clinical Research ID (CRID) is a Unique Universal ID. Create your CRID (for yourself if you have ReNU and/or for your ReNU child) and you decide which researchers to share it with. By sharing your CRID, researchers can then reuse, merge and share your research data without using your PII/PHI - personally identifiable health information.

Thank you for being an integral part of our community! Together we can achieve great things and make a lasting difference in the lives of those affected by ReNU Syndrome.

With gratitude and renewed hope,

The Board of ReNU Syndrome United

What’s New with ReNU

  • Smiling young boy with curly red hair sitting in a blue booster seat, wearing green clothes, with bandages on his cheeks and a cast on his arm, in a room with various stuffed animals and toys in the background.

    Spotlight on Bentley

    Thank you to our members for sharing your personal journeys! This month we learned about Ali and her son, Bentley.

    Read Bentley's Story
  • Announcement for the launch of a data collection program called RARE-X, with a logo and tagline underneath.

    Get Involved

    Now that we know the diagnosis, what can we do about it? Learn about opportunities where YOU have the power to move the research forward!

    Participate in Research
  • Display of ReNU Syndrome United branded activewear including a toddler tee and pullover hoodie, and adult t-shirts and tank tops with the ReNU Warrior logo and text.

    Support a ReNU Warrier

    Benefit the cause and get some ReNU gear - check out our new Bonfire store, where every purchase supports ReNU Syndrome United’s mission.

    Support with Bonfire
  • A cartoon octopus with blue spots next to the text "MOVE FOR REN" with "RENU" in orange.

    Fundraising & Awareness

    Join or Donate to our first virtual 5K Fun Run! Learn more about fundraising & awareness initiatives.

    #MOVEforReNU
  • Collage of children at the 2025 Inaugural ReNU Hope Conference, showing diverse kids smiling, playing, and posing indoors and outdoors.

    ReNU Hope Conference Updates

    Learn more about the conference or check out our incredible speaker lineup!

    We hope to see you there!
  • Website header with ReNU Syndrome United logo, navigation menu, and language selection dropdown in the bottom left corner

    Global Initiatives

    New! Use the translate options for the website from the lower left corner or the top navigation for additional languages

    Use Google Translate

Help AI Recognize Rare Diseases

ReNU syndrome tends to have distinct facial features - with your help we can research if AI can be used to identify ReNU to aid in diagnosis

Join GestaltMatcher