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
Once Upon A Gene
English - August 04, 2022 11:00 - 34 minutes - ★★★★★ - 258 ratingsParenting Kids & Family advocate caregiver disability genetherapy genetics inclusion parenting raredisease rarediseasepodcast raredisorder Homepage Download Apple Podcasts Google Podcasts Overcast Castro Pocket Casts RSS feed
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 metal 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: [email protected] or [email protected]
LINKS & RESOURCES MENTIONED
Global Genes Patient Advocacy Summit
https://globalgenes.org/event/rare-patient-advocacy-summit/
FHSD Society
https://www.fshdsociety.org/
Accelerating Rare Disease Drug Development: Lessons Learned from Muscular Dystrophy Patient Advocacy Groups
https://link.springer.com/article/10.1007/s43441-020-00221-4
Parent Project Muscular Dystrophy
https://www.parentprojectmd.org/
Accelerating Rare Disease Research by Listening to the Patient Voice
https://www.syneoshealth.com/insights-hub/incorporating-the-patient-voice-into-the-rare-disease-drug-development-paradigm
Muscular Dystrophy Association
https://www.mda.org/
Books by Raymond Huml
https://www.amazon.com/s?i=stripbooks&rh=p_27%3ARaymond+A.+Huml&s=relevancerank&text=Raymond+A.+Huml&ref=dp_byline_sr_book_1
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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 metal 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: [email protected] or [email protected]
LINKS & RESOURCES MENTIONED
Global Genes Patient Advocacy Summit
https://globalgenes.org/event/rare-patient-advocacy-summit/
https://link.springer.com/article/10.1007/s43441-020-00221-4
Parent Project Muscular Dystrophy
https://www.parentprojectmd.org/
Accelerating Rare Disease Research by Listening to the Patient Voice
Muscular Dystrophy Association
TUNE INTO THE ONCE UPON A GENE PODCAST
https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7
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https://overcast.fm/itunes1485249347/once-upon-a-gene
CONNECT WITH EFFIE PARKS
https://twitter.com/OnceUponAGene
https://www.instagram.com/onceuponagene.podcast/?hl=en
Built Ford Tough Facebook Group