Best of the 2024 Nano-rare Patient Colloquium episode artwork

EPISODE · Dec 4, 2024 · 58 MIN

Best of the 2024 Nano-rare Patient Colloquium

from Patient Empowerment Program: A Rare Disease Podcast

This year’s Colloquium spanned two perfect autumn days in beautiful Cambridge, Massachusetts where hundreds of nano-rare community members from around the world gathered under a single roof to learn, connect, and support one another. We’re pleased to announce that the event welcomed over 750 attendees, both in-person and virtually. It’s each and every one of you who made the event such a success! For this special episode, we gathered the ‘Best’ clips from the event for you to learn from and enjoy. To submit questions for our upcoming Q&A episode, email [email protected]. We can’t wait to hear from you! 2024 Colloquium Recap On this episode: 2:07 Daphne Graskewicz-Prado, ASO The Perilous Journey to Diagnosis and Treatment for Nano-rare 9:35 Ryan Strankowski and Dr, Nelson Leung, Ryan’s Journey and Clinical Experience 15:55 Luke Rosen, Megan Hedstrom, and Dr. Jennifer Bain, Susannah’s & Sloane’s Journeys and Unique Clinical Experiences 21:49 Kelley Dalby and Dr. Olivia Kim-McManus, Connor’s Journey and Clinical Experience 30:00 Dr. Julie Ziobro and Dr. Horacio Kaufmann, Building a Nano-rare Network and Managing Institutional Challenges 37:38 Dr. Andrew Lo and Dr. Alan Lotvin, Innovative Ways to Support Nano-rare 42:30 Dr. Toby Ferguson, Dr. Liz Berry-Kravis, and Dr. Eugene Shneider, Changing the World One Patient at a Time 47:30 Dr. Kate Dawson, What It Means to be a Parter with n-Lorem for Nano-rare 50:23 Dr. Stanley Crooke, Providing Hope for a Better Future, One Nano-rare Patient at a Time

Episode metadata supplied by the publisher feed · Published Dec 4, 2024

Embed this episode

NOW PLAYING

Best of the 2024 Nano-rare Patient Colloquium

0:00 58:13

No transcript for this episode yet

We transcribe on demand. Request one and we'll notify you when it's ready — usually under 10 minutes.

No similar episodes found.

No similar podcasts found.

Frequently Asked Questions

How long is this episode of Patient Empowerment Program: A Rare Disease Podcast?

This episode is 58 minutes long.

When was this Patient Empowerment Program: A Rare Disease Podcast episode published?

This episode was published on December 4, 2024.

Can I download this Patient Empowerment Program: A Rare Disease Podcast episode?

Yes. Use the download control on the episode player to save the publisher-provided media file.
URL copied to clipboard!