The MiaThrives Podcast

Julia is a very busy young woman with an amazing story to share with the EB community.  Trust us you don't want to miss a chance to hear about this student and her very full life in Germany. 

https://www.eb-haus.org/

Racquel talks about her life with EB! From growing up in Hawaii to her many creative talents and day to day life with EB this episode is like sitting down with two friends over coffee!  

In this weeks can't miss episode we chat with Kourtney and her amazing mom Nurse Nelle to discuss their amazing connection, the business they've created and everything in between!  

https://kokoandshae.com/

Martine joins us all the way from Norway to share her story of learning to live with her EB, and not against it! This 15 year old is figuring out so much about herself and is committed to increasing awareness about EB and the amazing people in this community. 

Adam, a Canadian Pharmaceutical Consultant joins the MiaThives Podcast to discuss three new and exciting drugs for the EB community. EB is close to his heart because co-host Emily is his sister, tune in to this informative episode below.

https://epidermolysisbullosanews.com/2021/12/03/fda-extends-decision-on-filsuvez-gel-for-skin-wounds-to-february/

https://epidermolysisbullosanews.com/2020/11/11/treatment-begins-phase-3-trial-of-d-fi-rdeb-wound-gene-therapy/

https://castlecreekbio.com/autologous-fibroblast-pipeline/gene-therapy-dystrophic-epidermolysis-bullosa/

https://epidermolysisbullosanews.com/kb103/

We are beyond thrilled to welcome Claudia to the MiaThrives Podcast!  This accomplished young woman is one of greatest advocates we have ever met and has opened up about her life with EB in so many ways and for so many years.  A real talk about struggles, family, relationships, and so very much more.  

https://debraireland.org/

Joining us all the way from Belgium Katleen shares her story with Emily and Jill.   As a mother and a partner to individuals with EB Katleen is so open and honest. You don't want to miss this episode! 

Mary is such an amazing and accomplished young woman who shares her story with our listeners.  New jobs, new adventures and a connection to Selena Gomez are just a few of the topics covered in this episode that you do not want to miss! 

Mary's Kaleidoscope Story

Mary's EB Research Partnership debut 

Alex takes a huge leap into joining the EB community by sharing his story.  He speaks with such honesty about the ups and downs of having EB and how it impacts his very full life.  

Check out Alex on YouTube and Twitch. 

https://www.youtube.com/channel/UCehGojRE8X-DXzOoX0qfEgw

https://www.twitch.tv/mrdoudrocks

Through smiles and tears Julia shares the story of her adored brother and how their families experience with EB has helped her find her purpose and passion. 

https://www.instagram.com/yogijewels/

https://miathrives.org/eb-hacks-yoga-class-collaboration-with-julia/