On Rare Innovators: Carmen Alonso and the Founding of ALPE - "The Love You Give, You Receive Back"

“I’m still very grateful for the life that I’ll have.” Cerys is living with Limb-Girdle Muscular Dystrophy type 2I/R9

“It’s important to stay connected” Daniel is living with Tuberous Sclerosis Complex (TSC)

“We just thought we were clumsy”. Katie and Allie are living with late-onset Tay-Sachs disease

"We say it all the time: We're lucky." Philip is living with hereditary transthyretin amyloidosis (ATTR)

“There’s always somebody to fight for.” Kady’s son Julien is living with Autosomal Dominant Hypocalcemia Type 1 (ADH1)

Another year of incredible conversations! On Rare celebrates our 2024 podcast guests!

“When numbness of the hands is a window to the heart,” Charles is living with Transthyretin amyloidosis cardiomyopathy (ATTR-CM).

“You can do everything that you want to do.” Erin is living with hypochondroplasia.

“I have 2I, but I am not 2I.” Misty’s Journey Living With LGMD2I/R9

“They told me to go home and love my child” Dawn’s daughter Vayle is living with Canavan Disease.

“I chose to reinvent myself.” Sean is living with hereditary transthyretin amyloidosis (ATTR).

“If I had known then what I know now, I wouldn’t have been so scared.” Alex is the mother of Hudson, a boy living with hypochondroplasia, a rare form of dwarfism.

Jonathan Fox, MD, talks about ATTR

“We Only Live in This Moment.” Part Two of a two-part conversation with Eric, who lives with Transthyretin Amyloidosis (ATTR).

“Accentuate the Positive.” Eric is living with Transthyretin Amyloidosis (ATTR).

“Having a brother with a rare condition has changed who I am. My family has a big heart because of my brother.”

“You have to find your people. It’s the most important thing you do along this journey.” Effie is the mother of Ford, a boy living with CTNNB1 syndrome and host of Once Upon a Gene.

“I didn’t know I was part of a rare community until I started listening to the Two Disabled Dudes podcast.” Effie is the mother of Ford, a boy living with CTNNB1 syndrome and host of Once Upon a Gene.

We listened, we learned, we laughed and we cried! On Rare celebrates the incredible conversations of 2023!