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

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

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!

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:

When Kristen describes infantile Tay-Sachs disease to her friends, she tells them to imagine Alzheimer’s or dementia in a baby.

May is Myositis Awareness Month! Myositis is an umbrella condition consisting of five rare subtypes, including inclusion body myositis (IBM).

People with rare diseases, and their families, often feel like they are the experts in the room when meeting with a doctor who is not specialized in their condition. They may find themselves educating medical professionals about the condition – and many have even experienced a doctor Googling their rare disease during an appointment. This exchange can be particularly stressful when someone is seeking symptom relief.

When you're impacted by a rare disease, preparing for a doctor's appointment can be a process. Five AllStripes ambassadors shared their top tips.

Diane and Wayne used to be ballroom dancers. Now, Diane doesn’t have the muscle control or balance to dance.

Recognizing the need for accelerating medical product development and modernizing the drug approval process, the 21st Century CURES Act was enacted in 2016 and augmented the ability for the FDA to incorporate real world data and patient perspectives into the drug approval process. While randomized clinical trials are still the gold standard, observational data is increasingly utilized to supplement clinical trial design, as synthetic controls in single arm trials and for label expansion.

PicnicHealth partners with life science companies, academic research institutions, and health systems organizations in applying real world evidence for the advancement of patient care and treatment. We produce high quality multimodel datasets that cover a patient’s entire medical journey and are more comprehensive and customizable than existing sources of real-world data.

Deborah was experiencing symptoms of myasthenia gravis for four years before receiving a diagnosis — right before her vow renewal.

Autism is a behavioral diagnosis, so it’s possible for individuals with rare single-gene disorders to receive an autism diagnosis on top of their rare disease diagnosis.

A seizure and a medical conundrum from her husband’s past were the clues to a condition that affects Jessie’s whole family.

In the span of a month, Al was diagnosed with late-onset Tay-Sachs disease and his fiancée broke off their engagement. Here's how he learned to surrender to the flow.

For many rare diseases, early diagnosis and treatment is crucial.

Leeya explains how a difficult time in her life allowed her to realize who her true friends are — and steered her toward advocating for the rare disease community on social media.

Jenny’s son, Victor, was born with an enlarged cheek, which turned out to be a fatty overgrowth caused by a mutation on Victor’s PIK3CA gene.

Manuel sees the people around him as his greatest strength, and believes that finding the IBM community has given him purpose.

Today, Ben is 5 years old. Stephan describes him as the funniest and smartest person he knows and a “very wise soul.”

“I miss her so much but know she is in a better place eating cookies, talking walks, playing piano and playing Cribbage and Yahtzee with her dad,” says Larry, whose wife Rachel passed away due to complications of PSP.

One of the best ways Matt has found to adjust to his daughter Wynne's diagnosis is by connecting with others in the Kleefstra community.

In his own words, Thomas shares his experience growing up with Crigler-Najjar Syndrome, Type 1, and receiving a liver transplant that changed his world.