44 episodes
The Rare hour with Christopher Velona Christopher Velona
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- Health & Fitness
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4.2 • 5 Ratings
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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 support has a new face.
David has a rare disease called Cowden Syndrome and is from the U.K. He set up a rare disease men's mental health group three and a half years ago to give men a chance to share their experiences and listen to others going through similar experiences.
He has currently increased the meetings to two times a month and is working with Eurordis in a mental health partnership network and social policy group.
To reach out to David for more info you can email him at:
dsross2013@gmail.com -
Nasty People in Rare...What gives?
On today's Rare Thoughts, I give my opinion about the summer conferences so far. Also, I discuss why people are so nasty in Rare diseases.
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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 -
Rare thoughts on the #Rarewarrior 5 x 5 challenge!
In this episode, we break down all of the sponsors and the fun day for the second, annual Rare warrior 5 x 5 challenge
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End of 2022 Re Cap Show
Join us, as we recap the best in the worst of 2022 through Project Sebastian, CSG, relationships, addiction, mental health, family, and the difficulties of living in rare.
You can find us on Social Media here:
https://www.instagram.com/projectsebastian1/ ~INSTA
https://www.facebook.com/projectsebi ~ FaceBook
Customer Reviews
Good to hear the real thing
Really appreciate you keeping it real about frustration etc and also the liberal use of very necessary words 😉 which is 100% rare disease life, eh?