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!

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).

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.

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.

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

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.

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

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.

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.

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.

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

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.

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.

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

“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.

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

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

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.

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.

Whether you’ve recently been diagnosed or you’ve been living with a rare disease for a while, managing your condition comes with some powerful truths. Here are 13 experiences commenters shared with #RareDiseaseTruth.

Throughout the month of February, members of the rare disease community have been sharing what it’s really like using the hashtag #RareDiseaseTruth.

“Gratitude for what we have today (however flawed by symptoms) is always preferable to wasting your emotional strength on lamenting a loss of function."

PicnicHealth is working on new research that uses data from medical records to better understand the day-to-day challenges of living with sickle cell. And we're looking for volunteers with sickle cell disease to help.

Yohanna’s son, Xander, was finally diagnosed with a rare condition known as SLC6A1 when he was two. Now, she has a message for other parents currently searching for a diagnosis.