About
A turning point in medicine, told through people.
GENEration Hope exists to tell the story of a turning point in medicine. For families living with rare genetic disorders, the future has often been framed around uncertainty. But across labs, clinics, startups, foundations, and patient communities, new tools are emerging that are changing what families can imagine.
Ron & Evie's story
GENEration Hope was created by Ron, a rare disease dad and filmmaker, after seeing how quickly the world of genetic medicine was changing. His daughter Evie has Phelan-McDermid Syndrome, and her story is part of the reason this project exists.
This section is intentionally editable. It can grow into a more personal founder note, a short documentary statement, or a page section that links directly to Evie's story.
Why now
Gene therapies are moving into clinical trials. RNA medicines are being designed for increasingly specific disorders. Newborn genome sequencing is changing the idea of early diagnosis. AI is beginning to reshape how medicines are discovered, tested, and delivered. GENEration Hope follows this shift as it happens.
Editorial focus
A focused lens on the science, policy, and care questions that matter to rare disease families.
Have a story, guest, or collaboration idea?
Send a note about interviews, press, foundation work, sponsorship, or rare disease stories that should be part of the conversation.
Contact GENEration HopeEditorial contributors
GENEration Hope is also building a circle of researchers, clinicians, advocates, foundation leaders, and rare disease parents who can help review explainers, suggest guests, clarify terminology, and keep coverage useful for families.
Learn about contributing