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The Rare hour with Christopher Velona
Christopher Velona
45 episodes
4 days ago
Join us for a one-hour rare disease community support group. Here we will discuss the topics that affect your daily life in rare diseases as well as special needs. Being a parent is hard but having a child in rare disease takes a special kind of person and the journey is filled with potholes along the way. The pathway may never be clear, but together we can navigate by supporting each other. P.S. we are not a glum lot!
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Mental Health
Health & Fitness
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All content for The Rare hour with Christopher Velona is the property of Christopher Velona and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.
Join us for a one-hour rare disease community support group. Here we will discuss the topics that affect your daily life in rare diseases as well as special needs. Being a parent is hard but having a child in rare disease takes a special kind of person and the journey is filled with potholes along the way. The pathway may never be clear, but together we can navigate by supporting each other. P.S. we are not a glum lot!
Show more...
Mental Health
Health & Fitness
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Wes Michael~ Giving families the opportunity where it is most needed. Their opinion.
The Rare hour with Christopher Velona
40 minutes 49 seconds
2 years ago
Wes Michael~ Giving families the opportunity where it is most needed. Their opinion.

Welcome to our summer series. You probably noticed a change in the intro right? Lol. We believe summer should be full of fun, good vibes, and great tunes!


Was Michael A founded Rare Patient Voice in 2013 to give patients and family caregivers with rare diseases, the opportunity to voice their opinions and research studies. This year the company celebrates its 10th anniversary. Rare Patient Voice has now conducted thousands of studies and rewarding patients and family caregivers with over $10 million dollars for their participation. Many have been recruited in person by West himself at patient events and through a robust referral program with patient advocacy and support groups. Rare Patient Voice now covers non-rare as well as rare diseases and conditions and has expanded from the United States to Canada, the United Kingdom, France, Germany, Italy, Spain, Australia, and New Zealand

Before launching Rare Patient Voice, Wes worked for healthcare market research firm Cantar health. He previously was a brand manager in marketing research manager at McCormick, the spice Company, and General Mills, working on Wheaties, total and kix cereals. He has a BA from the University of Pennsylvania and an MBA from the University of Chicago.


I like to think of Wes, regardless of all his many accolades, as just another good dude and rare patient advocate. He is helping the community through one research study at a time.

You can find Wes and the RPV team through these social media platforms:

Website: https://rarepatientvoice.com

Facebook: https://rarepatientvoice.com

Insta: https://www.instagram.com/rarepatientvoice

Linkedin: https://www.linkedin.com/company/rare-patient-voice

The Rare hour with Christopher Velona
Join us for a one-hour rare disease community support group. Here we will discuss the topics that affect your daily life in rare diseases as well as special needs. Being a parent is hard but having a child in rare disease takes a special kind of person and the journey is filled with potholes along the way. The pathway may never be clear, but together we can navigate by supporting each other. P.S. we are not a glum lot!