ONCE UPON A GENE - EPISODE 146 - When Your Career and Personal Life Collide - VP of Medical and Science Strategy and Head of Syneos Health's Rare Disease Consortium FSHD Rare Dad - Raymond Huml
Ray Huml and his wife have two kids with Facioscapulohumeral Muscular Dystrophy (FSHD). He's an author, Vice President of Medical and Scientific Strategy and Head of the Rare Disease Consortium at Syneos Health Clinical Solutions.
EPISODE HIGHLIGHTS
As a family, how do you navigate mental health?
We've decided as a family to take what's not good and make it good. We reach out to the professionals we need to for mental and physical health. My dad used to say we're all composed of body, mind and spirit and they're all interwoven, so you have to address all aspects.
How do you find patients to participate in clinical trials?
There has to be a compelling argument for why a person should participate in a clinical trial. I lobby heavily in the FSHD Society to develop ICD-10 codes for Muscular Dystrophy, including FSHD, so patients can be tracked. That provides a digital footprint of identifiable patients with a diagnosis. With HIPPA rules, you can't contact patients directly, but the data can be used to know how many patients there are.
What advice do you have for patient advocacy groups to get ICD-10 codes approved?
Be persistent and advocate for each rare disease individually so it's more easily differentiated and tracked.
How have things changed for you as a caregiver as your children have grown into adults and gone away to college?
We've changed our life in order to support them, traveling often to help how we can, encouraging them and staying connected.
CONNECT WITH RAY
Email: raymondhuml@gmail.com or raymond.huml@syneoshealth.com
LINKS & RESOURCES MENTIONED
Global Genes Patient Advocacy Summit
Parent Project Muscular Dystrophy
Accelerating Rare Disease Research by Listening to the Patient Voice
Muscular Dystrophy Association
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