“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!

“In some ways, the sun has been my mortal enemy.” Jay is living with erythropoietic protoporphyria (EPP).

“Improvise. Adapt. Overcome.” Dan is living with limb-girdle muscular dystrophy, type 2I/R9 (LGMD2I/R9).

“People with EPP are shadow jumpers.” Brady is living with erythropoietic protoporphyria (EPP).

“Life after the transplant wasn’t straightforward.” Anne is living with autosomal dominant polycystic kidney disease (ADPKD)

“We named the new kidney - Bean.” Anne is living with autosomal dominant polycystic kidney disease (ADPKD)

“Love isn’t love till it’s given away.” Determination has helped Lacey fulfill her dreams, but it hasn’t stopped the progression of LGMD2I/R9.

“You can brush it off or you can speak up for yourself” Kristen has been advocating for herself and others who live with achondroplasia since she was six years old.

“When life gives you lemons, make lemon gelato!” Brent is disabled by PKAN, a rare neurodegenerative disease, yet supported by his family he is making many of his dreams come true.