Will Greene

Spoke on @wef’s Radio Davos about rare disease and why it remains one of healthcare’s greatest unmet needs. Thanks to the World Economic Forum for spotlighting the impact of rare disease research and innovation. weforum.org/podcasts/radio-d…

Joined @dslevine on RARECast to discuss our new @wef white paper on rare disease. Our study argues that data-driven investment in rare disease can unlock trillions in long-term economic and societal value. globalgenes.org/raredaily/a-…

The World Economic Forum (@wef) published our new white paper today on rare disease and the need for stronger data systems to unlock societal value. I served as lead author and will share more in upcoming podcasts and events. weforum.org/publications/mak…

To everyone who supported FPWR's work this past year, our 2025 Impact Report shows what your generosity made possible. Thank you! fpwr.org/fpwr-2025-impact-re…

Most people don’t love the American healthcare system, and for good reasons. But for my family, caring for a child with a rare genetic disease, it’s been extraordinary in the ways that matter most. I wrote this to explain why. medium.com/@tigerminer/why-i…

Rare diseases affect 300M+ people worldwide and impose trillions in economic costs each year. We know the burden is enormous. We just don’t measure it well. My take on what we count, what we miss, and why it matters linkedin.com/pulse/rare-dise…

Big Pharma talks a big game on “patient advocacy.” Some of it hits the mark. Some of it’s shockingly stupid. My take in @statnews: statnews.com/2025/11/03/big-…

Spoke at @theNASEM in DC a few weeks ago about the evolving role of AI in genomic medicine and rare disease research, and how caregivers like me are already using it every day vimeo.com/1135799026

Mission accomplished. Fundraising goal exceeded, marathon completed. Now on to the next one.

T-minus 48 hours until the @nycmarathon and less than $1K from my $26,200 goal. Running to raise money for @fpwr, a remarkable nonprofit working to advance treatments for a terrible genetic disease. Every bit helps! impact.fpwr.org/fundraiser/6…

Happy to share that Dr. Diane Stafford, one of the world’s leading experts on Prader-Willi syndrome (PWS), will be honored at FPWR's Live Life Full Celebration on Oct 4 in Menlo Park. I have a few free tickets—ping me if interested. More info: impact.fpwr.org/event/live-l…

Heading back to DC on Oct 28 to speak at a National Academies workshop on the role of AI in genomics & precision health. I’ll share perspectives as a rare disease caregiver who uses AI extensively for research and advocacy. Event details + registration: nationalacademies.org/event/…

A timeline of PWS milestones. Just decades ago, the outlook was devastating. Today we have engaged families, powerful advocacy organizations, informed clinicians, dedicated researchers, two FDA-approved treatments, and a pipeline of therapies in clinical trials. Great progress!

AI is moving from promise to practice in pediatric genomic medicine. Here are a few ways it is beginning to transform care and research for children with rare diseases. linkedin.com/pulse/three-way…

Taking on my first 26.2 at the @nycmarathon on Nov 2. Running for my son Ari, and to support @fpwr in advancing Prader-Willi syndrome research. Here’s why: linkedin.com/pulse/why-im-ru…

🎉 Bay Area friends, join us Oct 4 in Menlo Park to celebrate a huge milestone for the Prader-Willi syndrome community: the FDA approval of Vykat XR, the first-ever treatment for hyperphagia in PWS. Enjoy music, food and drink as we mark this moment. 🎟️ impact.fpwr.org/LLF2025

On Nov 2, I’m running the @nycmarathon to support research for a serious genetic disorder that affects my son and many other children worldwide. Please help us fund progress through the Foundation for Prader-Willi Research. impact.fpwr.org/fundraiser/6…

The recent approval of Vykat XR is a big deal for the PWS community, and a reminder that rare disease research can unlock new approaches to broader public health challenges like obesity. Cutting that research will stall progress for everyone. kffhealthnews.org/news/artic…

Just a few decades ago, Prader-Willi syndrome (PWS) almost always meant severe impairments. But thanks to research and emerging therapies, our community now has more reason to hope than ever before. linkedin.com/pulse/hope-shad…

Just published in @RareRevolutionM: a look at how rare disease nonprofits are advancing research and therapeutic development through innovative finance. Draws on our experience at @fpwr and other peer organizations. Feedback welcome!