https://www.renusyndrome.org/events daily 0.75 2026-04-03 https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/a5db44f9-ce3d-41db-8f4c-59e43c1ed579/Screenshot+2025-04-01+at+8.54.18%E2%80%AFAM.png https://www.renusyndrome.org/events/move4renu monthly 0.5 2026-04-03 https://www.renusyndrome.org/events/us-renu-syndrome-awareness-day monthly 0.5 2026-01-25 https://www.renusyndrome.org/events/global-renu-syndrome-awareness-day monthly 0.5 2026-01-25 https://www.renusyndrome.org/events/giving-tuesday monthly 0.5 2026-01-25 https://www.renusyndrome.org/events/inaugural-renu-syndrome-conference monthly 0.5 2025-07-16 https://www.renusyndrome.org/events/1st-renu-syndrome-awareness-day monthly 0.5 2025-04-02 https://www.renusyndrome.org/events/move-for-renu-2025 monthly 0.5 2025-04-02 https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/52ffd330-9469-4d27-bc4f-350fe3e7a3b3/MOVEforReNU_Banner.png Events - MOVE for ReNU - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.renusyndrome.org/events/raren-x-registry-info-session monthly 0.5 2025-04-01 https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/e426119b-1cf1-4038-bdc7-cb6bac1cdb5e/RNU4-2+Data+Collection+Program Events - Rare-X Registry Info Session - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.renusyndrome.org/events/webinar-111324 monthly 0.5 2025-01-09 https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/2663455f-a2d1-4a2d-b6c5-01866094d222/Webinar_November13_2024.jpg Events - Q&A with Ernest Turro, Andrew Mumford, Kathleen Freson, and Irene Valenzuela - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.renusyndrome.org/events/webinar-103024 monthly 0.5 2025-01-09 https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/b8ae97c7-2751-4ad8-8688-a3481e1085e7/Webinar_October10_2024.jpg Events - Q&A with Nicky Whiffin, Stephan Sanders, and Anne O'Donnell - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.renusyndrome.org/events/webinar-012325 monthly 0.5 2025-01-09 https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/5880a764-ba4b-407d-84e0-5ea68becb133/ReNU+Syndrome_January+23+Webinar+Flyer+ENG.png Events - Q&A with Christel Depienne, Caroline Nava, Clément Charenton, and Jean-Louis Mandel - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.renusyndrome.org/newsletter daily 0.75 2026-03-30 https://www.renusyndrome.org/newsletter/2025-10 monthly 0.5 2026-03-24 https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/9ba449e2-e1fd-4e7c-bc02-b2560dd6b4f7/2025-10-31_ReNewsletter-SquareSpace-HeaderBanner-Halloween+copy.jpg Newsletters - October 2025 ReNewsletter - Make it stand out ReNU Community, As we celebrate Halloween and our 1st birthday as an organization, we’re excited to share some important updates on the progress we’re making together in the ReNU syndrome community! https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/74e67b00-229f-4ecf-bab0-aef37e4b6741/RSU%2BCitizen.jpg Newsletters - October 2025 ReNewsletter - Announcing Our Partnership with Citizen Health to advance research for ReNU syndrome ReNU Syndrome United is partnering with Citizen Health to address challenges our families face every day: making sense of complex medical information, accessing records, and feeling heard in the research process. Families will gain easier access to medical records while helping drive critical research forward. Through our partnership, securely organize medical records into a private, digital profile—no site visits required—get instant answers based on YOUR personal journey, and help power research that could lead to new treatments. Your real-world experiences could contribute to critical natural history studies, enabling researchers to better understand ReNU, uncover patterns, and accelerate progress toward breakthroughs. This partnership brings: AI Health Advocate tools - to help families understand medical journeys Practical support - All records can be centralized and accessible in emergencies Personal support - 1:1 onboarding for every family who needs it Community strength - Together, we build the data that drives research priorities Follow updates on renusyndrome.org/research for more information and instructions to register - coming soon! https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/ee046356-660c-4d51-b60a-0ce9bbabde03/121225_ReNU-Spanish-Panel-Webinar.png Newsletters - October 2025 ReNewsletter - ️ ReNU syndrome webinar in Spanish / Únete a nuestro seminario web en español sobre el síndrome ReNU Register here/ reserva ahora for our latest webinar for Spanish speaking families living with ReNU syndrome. We will be joined by experts to discuss the latest research and answer your questions. Viernes 12 de diciembre de 2025 / 3:00 pm (hora del Reino Unido) / 4:00 pm (hora de España) Acompáñanos en nuestro próximo seminario web dirigido a familias que viven con el síndrome ReNU y también a profesionales implicados en su seguimiento. Contaremos con la participación de expertos que hablarán sobre las últimas novedades científicas y responderán tus preguntas. Featuring / Presentado: Irene Valenzuela Palafoll, MD / Carol Rodríguez / Ernest Turro, PhD https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/304c7d1f-c8cb-4dc4-9f0c-9ee948e00312/ReNUsyndrome-GivingTuesday.jpg Newsletters - October 2025 ReNewsletter - Warm hearts. Raise hope. Fund Research for ReNU this Giving Tuesday, December 2nd Giving Tuesday is a global giving movement unleashing the power of radical generosity during the giving season to encourage good deeds following the traditional holiday shopping days. Since then, it has grown into a global movement that inspires hundreds of millions of people to give, collaborate, and celebrate generosity. Let’s raise $500,000 to advance research; YOU can help us get there! Get involved: Share our Giving Tuesday campaign with the zeffy donation link on social media and with your networks Engage businesses you’re connected to if they’re willing to support us Host a “Cocoa for a Cause” stand or other fundraiser in your community Post #ReNUsyndrome #ReNUhope #500Strong500KBold #GivingTuesday Tips for Success: Add baked goods, crafts, have kids decorate signs or cups, share personal stories, ask your employer to provide a matching gift Share your story: Message rachel.johnson@renusyndrome.org https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/78629a8f-c3eb-412f-a9e3-d55bb26111e7/Screenshot+2025-10-19+at+5.37.41%E2%80%AFPM.png Newsletters - October 2025 ReNewsletter - The Power of Patient Advocacy in Genomics: Influencing Research, Clinical Practice and Decision Making ReNU Syndrome United contributed to Wellcome Connecting Science’s course on FutureLearn. Check out the the Case Study on ReNU Syndrome United or sign up for the full online course, for free! Interested in learning more about patient advocacy or genetics? Our organization also has also partnered with NORD, the National Association for Rare Disorders. NORD offers RareEDU®, self-paced learning on a range of topics, from forming a patient organization to making it research-ready, to understanding your role in the drug development process. We invite you to take free courses at https://learn.rarediseases.org/. https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/c3772442-031e-40f6-a302-fbaf789d6e4b/Screenshot+2025-10-26+at+12.48.10%E2%80%AFPM.png Newsletters - October 2025 ReNewsletter - Unique Guide - NEW Translations Available The Unique Guide is now available in Spanish, German, and Chinese! Massive thank you to Nuria Brämswig, Yuyang Chen, Anna Pelling and Unique for making this guide more accessible around the world! Are you a scientific or medical professional (or do you have a contact that is) that would like to volunteer to help translate the guide into other languages? Email united@renusyndrome.org to let us know! https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/d6cf9b5d-a424-47d7-8dc8-c604a82b241d/RNUopathies_DNA-header-image.jpg Newsletters - October 2025 ReNewsletter - NEW - RNUopathies.org website and group The RNU community is quickly expanding! Shortly after discovering the effects of RNU4-2 genetic mutations, RNU2-2 / ReNU2 quickly came into the spotlight for having similar effects but presenting with more severe epilepsy, and we also learned about RNU5! We have launched an umbrella group for these RNUopathies, along with a website and (Facebook) Meta forum for affected families to connect with each other and share resources. On our quest for treatments, we may encounter opportunities for joining forces in clinical trials/testing, and we can all unite to navigate life with a rare diagnosis. The RNUopathies United Community is open to ALL RNUopathies, friends, familiy, clinicians, researchers, and advocates. RNUopathies.org | https://www.facebook.com/groups/renuopathies https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/0b66a437-a782-41f4-8db8-39c9b0c0a66c/ChildNeurologySociety.png Newsletters - October 2025 ReNewsletter - RNU4-2 at the Child Neurology Society Meeting We are delighted to shared that RNU4-2 was mentioned during the Satellite Symposium of the 54th Child Neurology Society Annual Meeting where it was pointed out that “…real-world clinical cases, including rare and emerging conditions like ReNU syndrome, underscore the value of comprehensive genomic and transcriptomic approaches. “ - 2025 CNS Program, page 59 Open committee role alert! If anyone in our community is interested in becoming a liaison for us by following the latest news and developments on a specific specialty related to ReNU syndrome (neurology, vision, bone health, etc.) please fill out the Volunteer Survey to express your interest! https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/671e27eb-4a99-45f7-90e1-3a45810ae185/RNU4-2+Map.png Newsletters - October 2025 ReNewsletter - ️ MAP Updates Thank you to everyone registered on our map! If your country isn’t mentioned, add it here. Represented to date: Australia, Belgium, Brazil, Canada, China, Czech Republic, Denmark, France, Germany, Hong Kong S.A.R., Iceland, Ireland, Israel, Italy, South Korea, Netherlands, New Zealand, Norway, Poland, Romania, Russia, Scotland, Spain, Sweden, Switzerland, Turkey, Ukraine, United Kingdom, and the United States. Our map is a powerful tool for getting RNU4-2 acknowledged globally. We have strength in our numbers, and are so happy that you have started to make more personal connections based on locations and variants. Every entry shows the world that we are unified, organized, and growing! https://www.renusyndrome.org/newsletter/2025-09 monthly 0.5 2025-10-19 https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/c573c6b0-c88e-4778-9248-c3d36fe8e08d/Screenshot%2B2025-09-15%2Bat%2B7.09.21%25E2%2580%25AFAM.png Newsletters - September 2025 Newsletter NEW: ☑️ Newly Diagnosed Checklist & Get Involved Survey https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/40ac640f-dca9-4c32-80cb-c667c61bbc09/Blue4ReNU-FundraiserUpdate.png Newsletters - September 2025 Newsletter - #Blue4ReNU Campaign Update We’re thrilled to share that the #Blue4ReNU campaign has raised $2,869 to date—a testament to the strength and generosity of our community! Every dollar helps us push forward awareness, research, and support for families affected by ReNU Syndrome. Participate: Wear blue & share your ReNU story on social media using #Blue4ReNU Encourage your supporters to donate: ReNU Hope Today Host a local awareness event or fundraiser. Purchase ReNU swag from our online store (attach link) Encourage friends and family to donate or spread the word https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/888e2d0e-6314-44b8-b39a-a2d808fda49a/Screenshot+2025-09-10+at+4.14.56%E2%80%AFPM.png Newsletters - September 2025 Newsletter - Host a Fundraiser on FB for ReNU Syndrome Log into Facebook > Go to Fundraisers Page https://www.facebook.com/fundraisers or click “Fundraisers” in left-hand homepage menu Click “Raise Money” > select “Nonprofit” as fundraiser type Search for ReNU Syndrome United - Search for & select “ReNU Syndrome United” from list Set Fundraiser Details Goal Amount: Choose a fundraising target (e.g., $100, $250, $500) End Date: Typically set to end a few days after your fundraising event Title & Description: Facebook provides a default, but feel free to personalize it Example: “For my birthday, I’m raising funds for ReNU Syndrome United to support families, research, and awareness for this rare condition. Every dollar makes a difference!” Cover Photo - Use FB default image or upload a pic of your child, family, or a ReNU event Click “Create” - Your fundraiser will go live and be shared on your timeline. Invite Friends - Personally invite friends & family to donate. FB allows you to send invites directly. Share Updates - Post thank-you messages, progress updates, reminders to keep momentum going https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/0219da76-31e5-43e3-8860-d8e23a16801a/Northwell_Health_Logo.png Newsletters - September 2025 Newsletter - We NEED your help! Participate today in the ReNU Clinical Survey To participate, please email: NGHI@northwell.edu We need global participation to ensure accurate reporting and meaningful insights. The ReNU Clinical Survey is a cross-sectional study designed to: Understand the spectrum of symptoms individuals experience Track how these features change or progress over time Empower families with data to provide optimal care Support researchers in developing targeted treatments Help clinicians and genetic counselors recognize ReNU Syndrome more effectively Your voice matters—please take a few minutes to complete the survey and share it widely. NOTE: This is a multi-step process. You will receive a consent form to sign and send back first. 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Photo Gallery Read Mia Joy's Story* https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/1761572971203-NHO9OJXC8TRSN0NI1QX8/Max-K-IMG_0449.jpg Photo Gallery Read Max's Story* https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/1734611411605-SIG3LTYWDZFXLJUZ3UKL/Eliot%2B1.jpg Photo Gallery Read Eliot's Story* https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/1733669393896-W56UTQHS0TSSQYU92ZC5/IMG_6598.jpg Photo Gallery Read Isla's Story* https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/1732545051329-U7W5223PJYTVLZ411ZN0/Cooper_pumpkin.jpg Photo Gallery Read Cooper's Story* https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/1746100732744-JEG0VXDJKTHGJMU3YUFV/Sammy%2Bin%2Bpool.jpg Photo Gallery Read Sammy's Story* https://images.squarespace-cdn.com/content/v1/66cde7d2bedfe27eac771da1/d4bdf0c5-054f-4164-ab1d-7c2ceaf25379/Aaron_C_427818141_10161054677639598_6012994307064596893_n.jpg Photo 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