Harmony 4 Hope

11/11/2025

Planning to attend in person? Please REGISTER TODAY to ensure your lunch.

11/05/2025

Join us for an inspiring afternoon of stories, songs and science amplifying Rare Disease.

10/14/2025

Join Us for Rare Storytellers: Navigating Pediatric to Adult Care -https://harmony4hope.org/rare-storytellers-navigating-from-pediatric-to-adult-care/

04/02/2025

03/26/2025

Applications are OPEN for our H4H Research Grant! Calling all researchers working on a project that benefits pediatric patients facing difficult diagnoses, specifically those affected by Rare Diseases.

Apply by April 6 for the opportunity to secure $20,000 in funding for your project!! Get started here: https://harmony4hope.org/2025-research-applications-now-open/

03/14/2025

NOW OPEN: Rare Diseases Research Applications are LIVE! H4H will fund a research project that benefits pediatric patients facing difficult diagnoses, specifically those affected by Rare Diseases. Apply today - https://harmony4hope.org/2025-research-applications-now-open/

05/18/2024

All about Shukla Vernon Syndrome! SHUVER is an x-linked recessive neurodevelopmental disorder and affects 1 in 13,861 according to the NIH. We see you ! Learn more here: https://pubmed.ncbi.nlm.nih.gov/33810051/

05/15/2024

- we’ll be in the Chicago area for an evening of stories & music on May 18 for “Rare Storytellers: A Unique Event in Two Acts!” See more information: https://www.oillamptheater.org/special-events/rare-storytellers

02/29/2024

Happy ! Today, and every day, we rock stripes for Rare Disease, but do you know the full story and why the zebra print is related to a Rare Disease diagnosis?

The answer lies in how medical students are taught. That if they “hear hoofbeats,” chances are it’s a horse – to look for the common answer. BUT – in 1 in 10 cases, it’s not a horse, it’s a ZEBRA. So today, we wear our stripes to honor the zebras among us.

Learn more via National Organization for Rare Disorders, Inc. (NORD): https://rarediseases.org/rare-disease-day/