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The Rare hour with Christopher Velona
Christopher Velona
45 episodes
3 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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How social media helps awareness with Megan Loden
The Rare hour with Christopher Velona
39 minutes 19 seconds
3 years ago
How social media helps awareness with Megan Loden

Megan is changing how rare disease families interact. With the help of social media, Megan's spin on the day-to-day lives of rare diseases has us laughing a bit more. You can see in her Instagram reels as she tells the truth through deadpan humor. 

You will like this creator for sure on today's show!


Megan is a mom to twins — identical 18-year-old girls — and a 14-year-

old son. She, her husband, and her kids live just outside of Phoenix. She is

a writer, caregiver, and mom. Maybe most importantly, Megan is also

an advocate for rare diseases and rare disease caregiving. She feeds

her soul with her career and works at ANGEL AID CARES uplifting

other caregivers. She is currently the chair of the Arizona Angioma

Community Alliance and treasurer of the HOD Association in her “free”

time. Follow her on Facebook, or Instagram, or check out her website!

meganloden.com

Facebook:

https://www.facebook.com/megan.loden.5?ref=bookmarks

Instagram:

https://www.instagram.com/megan.loden/

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!