This week, Finding Dory and disability representation, how the time tax relates to rare disease and profound insight on giving and receiving support.

Barry is a gregarious, outgoing jokester. He’s also leading the charge for adult GM2 research.

Content about disabilities, curated with the rare disease community in mind.

After Alexis began experiencing eye pain, a doctor predicted she had a long diagnostic journey in front of her. He was right.

After Dinah’s daughter was diagnosed with CCM3, a rare condition that causes brain lesions, she went looking for clues about what might lie ahead.

To me, they mean self-confidence, loving my disabled body fully and unapologetically taking up space.

Julie’s daughter Amber, who has Kleefstra syndrome, went through a period of regression that stumped her doctors.

Karen would rather people take a straightforward interest in Doug than stare at him.

How Julianne, a young adult with Gorham-Stout disease, is pushing past her own discomfort to help others.

How making a friend in the rare-disease community led to an accurate diagnosis of PROS.

Joe is determined to help his family, one meal at a time.

Andrea was rejected for professional dance jobs because PROS caused growths to develop on her face, but she refused to let society’s standard of beauty stop her from living out her passion.

Scott was diagnosed with IBM four years ago, but works hard to keep doing the things he enjoyed before.

When Shaye first learned she and her baby were at risk for complications, she felt confused and devastated. Then she found others who'd been in her shoes.

When Elizabeth went to a doctor to treat her sore throat, she discovered that it was actually a symptom of a rare disease she’d unknowingly been living with her whole life.

PicnicHealth is excited to partner with Komodo Health to enrich its patient-centered real-world data Research Platform. This collaboration will enable PicnicHealth to unlock rich new insights about complex diseases and treatment outcomes.

When Sarah discovered a large dent on top of her head, it took several doctors to figure out that she had Gorham-Stout disease, which affects only 200 people in the world.

As physicians, Michael’s parents struggled with watching him suffer from unexplained symptoms, without a diagnosis or path to make everything better.

Kevin Dooley founded Cure IBM in 2017 to raise awareness of inclusion body myositis (IBM) and encourage research for an effective treatment and cure.

Caitrin lost her daughter to Sandhoff disease and sees contributing to research as one way to make sure Embree's memory lives on.

Mandy was born with overgrown lower limbs and a club foot. It took 30 years to find out the true cause.

“For 30 minutes in the morning, I allow myself to feel sorry for myself. But after 30 minutes, I have to go to work. And next thing you know, you’re back and making dinner.”

Mandy explains she has a “mutated PIK3CA gene” which causes cells in certain parts of her body to divide too quickly and survive longer than they should. This leads to an overgrowth of bodily tissue.

Doctors initially thought Julian had cerebral palsy, but after genetic testing, he was eventually diagnosed with Lesch-Nyhan disease. Now, his mother brings what she's learned from this experience into the classroom.

Whether you’re already a podcast lover or are just starting to explore the podcast universe, you're in luck: There are a good number of podcasts that highlight voices from the rare disease community! We’ve rounded up some of the rare disease podcasts we love that are going strong and putting out new and upcoming episodes. Here are some reliable — and educational — podcasts from and for the rare disease community: