VHL von Hippel-Lindau Archive

Patient Information – new info for VHL

Discussion of how the VHL Handbook helps both patients and doctors, and the power of sharing information — among patients and physicians worldwide.

Pheo Paratroopers – Patients Helping Patients

Allen Wilson of the Pheo Paratroopers joins Joyce and Mike to talk about the organization, its mission, and the recent International Conference on Pheochromocytoma and Paraganglioma.

Diagnosing a Rare Disease – a Case from Ireland

Mike and Joyce talk with Gloria about her family’s adventure getting to a diagnosis of a brain tumor and a rare disease.

Radiation protection in medicine – world view

Joyce speaks about radiation in medical imaging with Dr. Madan Rehani, Director of Radiation Protection at the International Atomic Energy Agency in Vienna, Austria.

Celebrating Rare Disease Day

Dr. Ilene Sussman speaks with Mike and Joyce about the celebration of Rare Disease Day being co-sponsored by the VHL Alliance and MassBio on February 28, 2014.

Transition, Moving forward

Joyce Graff retires from the VHL Alliance and formally launches the next phase of the Powerful Patient.

Tom Rath: Eat Move Sleep

Tom Rath speaks with Mike and Joyce about his most recent book, EAT MOVE SLEEP, in which he shares a phenomenal collection of insights and simple suggestions that help you manage your medical risks.

Report from Joyce’s Travels

Joyce Graff toured ten cities in September and October, speaking with audiences affected by VHL, BHD, and HLRCC. Mike Lawing interviews her about what she saw, what she did, and what she learned.

Redefining Cancer

Cheryl Gradziel, an analyst with Global Data, talks about the NCI recommendation to change the language of cancer to reduce overtreatment of early-stage tumors.

London, anyone?

Tonight I leave on the second leg of my 10-city tour. Next Saturday, September 29, I will be meeting with a group of folks in London, at Guy’s Hospital, next to Europe’s tallest building, the Shard skyscraper. I hope you will be there!! The meeting will be primarily aimed at people with VHL, HLRCC, or […]