The Misnomer of Rare [Disease] | Michelle Berg | TEDxFargo

TL;DR

The reality of rare diseases, affecting millions globally, with significant economic and personal impacts.

Transcript

I'm just curious Fargo how many have heard of a rare disease great great we've got some good hands up there so author speaker rare disease advocate and friend Laura King Edwards once said rare is code for not me I'm here to share about rare disease and about the misleading term that rare can be and how that should be important to all of us but befo... Read More

Key Insights

• ❓ Rare diseases impact millions globally, with over 10,000 identified conditions.
• ❓ Genetic origins contribute to over 80% of rare diseases, with limited treatment options.
• ❓ The economic burden of rare diseases in the U.S. exceeded $966 billion in 2019.
• 🖐️ The rare disease community plays a vital role in advancing genetic medicine and research.
• 🪛 Advocacy and policy change can support the rare disease community and drive progress.
• 🧑‍🏭 Small acts of kindness and understanding can make a significant difference for individuals with rare diseases.
• 😷 Rare disease research informs approaches to more common medical conditions.

Questions & Answers

Q: How are rare diseases defined in the United States?

Rare diseases in the U.S. are defined as those affecting fewer than 200,000 citizens, with over 10,000 identified conditions.

Q: What is the economic impact of rare diseases in the U.S.?

The economic burden of rare diseases in the U.S. was $966 billion in 2019, primarily due to lost productivity and healthcare costs.

Q: How does rare disease research benefit more common diseases?

Rare disease research informs approaches to common diseases like diabetes and cancer, driving advancements in genetic and cell therapies.

Q: How can individuals support the rare disease community?

Individuals can advocate for policy change, educate others about rare diseases, and show compassion through small gestures of kindness.

Summary & Key Takeaways

• Rare diseases impact over 33 million Americans and 400 million globally, with significant genetic origins and limited treatments.

• The economic burden of rare diseases in the U.S. alone amounted to $966 billion in 2019, affecting productivity and healthcare costs.

• Despite challenges, the rare disease community contributes to research advancements benefiting all medical fields.