Rare disease affects 1 in 10 people and over 30 million people in the US. At times we feel like society defines us by the disease instead of who we are as a person. Join hosts and advocates Anne Bruns and Seth Rotberg as they navigate different topics that impact those in the rare disease community, while also bringing guest speakers onto the show to share their story and their rare disease expertise.
A great episode continuing the discussion on genetic testing and the importance of using a genetic counselor. Big thanks to Lauren Lichten, an amazing genetic counselor, for coming on and talking about how a counselor can help with all aspects of genetic testing.
NSGC find a counselor link: https://www.nsgc.org/page/find-a-genetic-counselor
BIDMC HDSA Center of Excellence: https://www.bidmc.org/centers-and-departments/neurology/programs-and-services/parkinsons-disease-and-movement-disorders-center/programs/huntingtons-disease
Genetic testing is very personal and has no right or wrong answers when it comes down to knowing what to do for you and your family. Anne and Seth talk about their experiences with genetic testing, thoughts on how they would redo it and what to expect in Genetic Testing Part 2.
Happy Monday everyone! Newest podcast episode is up and it's one of our favorites. Rachelle Dixon from the HSAN1E Society is on chatting with us about the guilt within rare disease. The guilt of being a survivor, of passing down a mutation and more. We definitely know this is a topic not talked about as much and this is the first of more to come dealing with this subject. Take a listen to the podcast here and find out more about HSAN1E at https://hsan1esociety.org
Happy Monday- the latest podcast is up! Today we are chatting with Gunnar Esiason, a Cystic Fibrosis patient, advocate and pubic figure in the Cystic Fibrosis community. A great conversation on finding independence while dealing with a disease, dating and finding support. After you listen to the podcast, make sure you follow Gunnar on any of his sites to follow the incredible work that he is doing.
Rare Unplugged with Gunnar Esiason:
Breathe In Podcast
Boomer Esiason Foundation info:
Big thanks to Rob Long from Uplifting Athletes for joining us on Episode #2. Hear his incredible story and learn more about the 2018 Young Investigator Draft taking place in Philadelphia August 18th. It is an event you do not want to miss.
Young Investigator Draft: https://tinyurl.com/ycm2dg28