by Guest Author | Dec 9, 2024 | Podcasts
Emily Schaller, 42, is a heroine with one goal in mind, to Rock CF. A lot of laughs on this podcast with my friend Emily! She talks about her health, the Foundation, new and old legislation and what’s coming up in 2025! Equal parts spark, wit and humor, Emily is...
by Guest Author | Dec 4, 2024 | Media/Press
(Source: MIRS.news, Published 11/26/2024) Rep. Jason Morgan (D-Ann Arbor) is pushing for the Rare Disease Advisory Council to be a priority in the Senate this lame-duck session. Under HB 4167, the council would advise the Department of Health and Human Services (DHHS)...
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,...
