Firefly Chat
Gratis podcast

Firefly Chat

Podcast af Firefly Fund

Start gratis
Podcast by Firefly Fund 

Denne podcast er gratis at lytte på alle podcastafspillere og Podimo-appen uden abonnement.

Alle episoder

9 episoder
episode Firefly Chat Episode 7 (Part 2): NPC Moms React to Adrabetadex News artwork
Firefly Chat Episode 7 (Part 2): NPC Moms React to Adrabetadex News

A continuation of Firefly Fund co-founder Pam Andrews' discussion with NPC moms, highlighting the benefits of Adrabetadex. The moms share their fears about a future without the medication, the popular topic of risk vs. benefit to administer the medication, as well as thoughts about adding additional therapies to treat NPC children and give them the best chance to live healthy lives.

02. mar. 2021 - 34 min
episode Firefly Chat Episode 7(Part 1): NPC Moms React to Adrabetadex News artwork
Firefly Chat Episode 7(Part 1): NPC Moms React to Adrabetadex News

Firefly Fund co-founder Pam Andrews has a heartfelt and candid conversation with nine other NPC moms from around the world regarding recent news of the discontinuation of the medication Adrabetadex. This episode gives a glimpse into the difficult circumstances NPC families are facing, as well as their personal concerns and fears about their children's futures.

25. feb. 2021 - 38 min
episode Firefly Chat Episode 6: Mallinckrodt Pharmaceuticals artwork
Firefly Chat Episode 6: Mallinckrodt Pharmaceuticals

Firefly Fund founders Pam and Chris Andrews chat with the Mallinckrodt team. Dr. Steve Romano, Elissa Cote, and Sheila Talafous share their journies to joining the Mallinckrodt team, how rare disease has impacted them, and what is coming up with the study of adrabetadex.

02. dec. 2020 - 53 min
episode Firefly Chat Episode 5: NNPDF artwork
Firefly Chat Episode 5: NNPDF

Firefly Fund founders Pam and Chris Andrews celebrate NPC Awareness Month by having a conversation with National Niemann-Pick Disease Foundation, Inc., Executive Director Joslyn Crowe, MSW, MA, and NNPDF Board Chair Justin Hopkin, MD. They discuss Joslyn & Justin's journeys to NNPDF, the resources NNPDF provides, and what is on the horizon.

28. okt. 2020 - 1 h 37 min
episode Firefly Chat Episode 4: Newborn Screening artwork
Firefly Chat Episode 4: Newborn Screening

This month's episode of Firefly Chat focuses on Newborn Screening Awareness Month. The podcast was repurposed from a discussion at the recent World Orphan Drug Congress, featuring speakers Firefly Fund Executive Director and Co-founder Pam Crowley Andrews; Pat Furlong, with Parent Project Muscular Dystrophy; Emily Fields of Bluebird Bio; Dean Suhr, of the MLD Foundation; and Dr. Melissa Wasserstein, from Montefiore Medical Center. The panel was moderated by Firefly Fund friend and consultant to Firefly's Newborn Screening Initiative, Allison May Rosen.

26. sep. 2020 - 48 min
En fantastisk app med et enormt stort udvalg af spændende podcasts. Podimo formår virkelig at lave godt indhold, der takler de lidt mere svære emner. At der så også er lydbøger oveni til en billig pris, gør at det er blevet min favorit app.
Rigtig god tjeneste med gode eksklusive podcasts og derudover et kæmpe udvalg af podcasts og lydbøger. Kan varmt anbefales, om ikke andet så udelukkende pga Dårligdommerne, Klovn podcast, Hakkedrengene og Han duo 😁 👍
Podimo er blevet uundværlig! Til lange bilture, hverdagen, rengøringen og i det hele taget, når man trænger til lidt adspredelse.

Tilgængelig overalt

Lyt til Podimo på din telefon, tablet, computer eller i bilen!

Et univers af underholdning på lyd

Tusindvis af lydbøger og eksklusive podcasts

Ingen reklamer

Spild ikke tiden på at lytte til reklamepauser, når du lytter til Podimos indhold.

Det får du

Ubegrænset adgang til eksklusive podcasts
Ingen reklamer
20 timers lydbøger / måned
Efter prøveperioden kun 79,00 kr. / måned. Ingen binding.

Andre eksklusive shows

Populære lydbøger