by Guest Author | Dec 2, 2024 | Media/Press, News
There are 1 million people in Michigan with a rare disease, (and their family and friends) who will be impacted by passage of the Rare Disease Advisory Council (RDAC). Members of the RDAC are meant to offer advice, direct, and develop recommendations for policy around...
by Guest Author | Dec 2, 2024 | Podcasts
“Charity Care is the best kept secret in healthcare.” says Eli Rushbanks “Only 29 percent of the people who should be helped by 340B, are helped.” If, like me, you have not heard about Charity Care or Dollar For, I am glad you’re here! This podcast...
by Guest Author | Nov 25, 2024 | Podcasts
Are titles important? As a rare disease parent, we think you’re worthy of a Ph.D. Listen to our fun conversation about all things rare and the much needed title we may need (or not) to get things done. As a reminder, Beth Vanstone is the mother of two daughters,...
by Guest Author | Nov 18, 2024 | Podcasts
What is a Private Patient Advocate? Do you need one? Laura talks to Dr. Elena Borrelli who is a Doctor of Medical Science and a Board-Certified Patient Advocate who helps people and families with their health care journey. She practices in Shelby Township, Michigan....
by Guest Author | Nov 11, 2024 | Podcasts
Dylan Mortimer did the NYC Marathon. If you know him, you know that he had two double lung transplants. One in 2017 and one two years later in 2019. His second transplant was in NYC and Dylan talks about what it was like to go back to the streets he could barely walk,...