Episode 228 - Strength In Unity - The Power of Consolidated Rare Disease Advocacy, Collaborative Breakthroughs, and the Every Cure Initiative with Dr. David Fajgenbaum

Once Upon A Gene

ONCE UPON A GENE - EPISODE 228

Strength In Unity - The Power of Consolidated Rare Disease Advocacy, Collaborative Breathroughs, and the Every Cure Initiative with Dr. David Fajgenbaum

Dr. David Fajgenbaum is is a groundbreaking physician-scientist, disease hunter, speaker, and national bestselling author of Chasing My Cure: A Doctor's Race to Turn Hope Into Action. He joins me to discuss the critical role of unity among our rare disease patient advocacy organizations and why it's important to stick together. We'll also talk about the transformative potential of everycare initiative.

EPISODE HIGHLIGHTS

Why is it critical for rare disease advocacy organizations to strive for unity?

When there's splintering of fracturing among disease groups, there are less resources within each effort and there's a risk of duplicating efforts. There are also only so many experts to participate in a scientific advisory board and there may be competition for those experts among groups.

What is your best advice for organizations who may be experiencing competition or friction?

Friction happens because we care so much and we're driven to find treatments and solutions. When you want rapid solutions, it's important to recognize that the objectively best and fastest way to make an impact is working together collaboratively and consolidating resources.

What advice do you have for ultra-rare disease organizations that are worldwide and have a unique issue of centralizing patients and financial strength?

In the past I've seen this done well where existing organizations support new organizations starting in new regions of the world by sharing resources and materials and being a supportive partner. It's critical for disease organizations to work together on a global scale.

Can you tell us about Every Cure and how it aims to revolutionize treatments for rare diseases?

Every Cure is on a mission to unlock the full potential of every approved drug to treat every disease possible. When a drug is approved for one condition, there's often dozens of other diseases that the drug might be effective in. Every Cure was launched when learning that there was an incredible untapped opportunity to treat more diseases than approved drugs were originally intended for. There are also systemic barriers that prevent the untapped potential from being tapped into. I'm alive, along with thousands of other patients, because of drugs not intended for a disease that we re-purposed.

LINKS AND RESOURCES MENTIONED

Chasing My Cure: A Doctor's Race to Turn Hope into Action; A Memoir

https://chasingmycure.com/books/

Every Cure

https://everycure.org/

ONCE UPON A GENE - EPISODE 043 - David Fajgenbaum - Chasing My Cure - A Doctor's Race to Turn Hope into Action

https://effieparks.com/podcast/episode-43-david-fajgenbaum

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https://everycure.org/insights/

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