The Rare hour with Christopher Velona

Gina Mundy is an attorney specializing in childbirth cases. For over 20 years, her focus has been investigating and analyzing mistakes that arise during labor and delivery. She has spent countless hours meticulously scrutinizing childbirth cases, conducting interviews with delivery teams, and thoroughly examining medical records to understand every decision made during labor and delivery. Throughout her career, Gina has traveled nationwide, engaging with healthcare professionals such as doctors, nurses, and midwives to explore all aspects of labor and delivery. These interactions have provided her with invaluable insights, enabling her to appreciate the diverse perspectives in different regions of the country.isIn June 2023, Gina's book "A Parent's Guide to a Safer Childbir was published in June 2023ed. The book helps parents to avoid mistakes during childbirth and have a healthy baby. Instead of getting involved after a mistake was made, Gina gets involved before childbirth to help prevent the mistakes.

To find out more about Gina, please visit her socials below:

Website:

www.ginamundy.com

Linkedin

https://www.linkedin.com/in/gina-mundy

Instagram

https://www.instagram.com/ginamundy

Facebook

Facebook: https://www.facebook.com/profile.p

hp?id=100093989808329

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:

[email protected]

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.

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

In this episode, we break down all of the sponsors and the fun day for the second, annual Rare warrior 5 x 5 challenge

Do better, be better!

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

Today I talk about why am angry in this rare disease space.

The first two weeks of September or very painful and challenging. However, what does not kill you makes you stronger right? Thank God for my friends at global genes. The rest of the month should be easy!

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/