#219 It Happened To Me Podcast: Genetic Counselors for Rare Diseases

A new year means a new podcast! We are thrilled to announce that our host, Kira Dineen, is a co-producer of a new rare disease and medical challenges podcast called, It Happened To Me. 

In celebration of the launch we wanted to share an upcoming episode of the podcast where the hosts Cathy Gildenhorn and Beth Glassman interviewed Kira Dineen. There will also be another episode on the show where they flip roles and Kira interviews Cathy and Beth about their patient advocacy and stories. 

Hope you enjoy this episode and be sure to subscribe to It Happened To Me in your podcast player. We would really appreciate a rating and review as well on Apple and Spotify. This is KEY for a successful launch! 

Kira Dineen, MS, LCGC, CG(ASCP)CM has over a decade of podcast experience fueled by a passion for science communication. She has hosted and produced 7 podcasts. Her main show, "DNA Today", is in the top 1% of podcasts globally. Listeners Discover New Advances in the world of genetics through Kira’s interviews about genetic technology, disorders, and news. The show won the Best and Science and Medicine Podcast Awards for the last three years, among other awards. “DNA Today” has produced over 215 episodes. Kira is also the host of the PhenoTips Speaker Series, a live webinar interviewing international genetic leaders. Kira produces the Patient Empowerment Program, which is a nano-rare disease podcast. She was selected and served as a member of the National Society of Genetic Counselors’ Digital Ambassador program. Kira received her Diagnostic Genetic Bachelor’s of Science degree at the University of Connecticut and is a certified Cytogenetic Technologist. She received her Master’s of Science in Human Genetics at Sarah Lawrence College in New York and is a licensed certified genetic counselor currently practicing in Stamford, CT. 

On This Episode We Answer:

When should people consider genetic counseling?

Do you need a referral?

Does insurance pay for genetic testing and counseling?

Is genetic testing done before or after the visit? 

How many visits are typically involved for genetic counseling?

What reproductive options do couples have?

How do genetic counselors help people with genetic conditions?

Why are the advantages of having genetic testing? 

What have you learned from interviews with patients and rare disease advocates?

Do you recommend joining rare disease advocacy groups? Which ones?

Why study rare diseases?

What is CRISPR? How could this help with treatment of even cures of genetic conditions? 

What are nano-rare diseases?

For more information check out the National Organization of Rare Disorders’s Rare Disease Fact sheet.