When McKenzie’s daughter, Mia, was diagnosed with Leigh syndrome, McKenzie blamed herself for it. “Because it’s inherited,” she explains, “you get that feeling that you contributed in some way.”

John was diagnosed with late-onset Tay-Sachs, and now he's raising awareness about the condition while continuing to pursue his passions.

Theresa’s children, both in their 40s, were recently diagnosed with alpha-mannosidosis after almost a lifetime of experiencing symptoms.

One wrong click of the mouse led to Tim unknowingly publishing his online journal about progressive supranuclear palsy for all the world to see. He never could've imagined what happened next.

Kim’s son James began experiencing strange symptoms while away at college. The mystery condition began taking over his life, and eventually Kim tracked down what was happening: Wilson disease.

When Andrea was diagnosed with late-onset Tay-Sachs disease at 33, she didn’t know what to expect. Today, life looks different, but she still enjoys the hobbies she loves the most.

Learn more about the causes, symptoms and treatments available for Wilson disease, a rare condition that causes free copper to build up in the liver.

Ever since her son, Will, was diagnosed with SURF1-associated Leigh syndrome, Kasey has gone to great lengths to drive forward research not only for his disease, but for other rare diseases as well.

Michelle lost both of her sons to a rare condition called Lesch-Nyhan disease. Almost a decade later, she remains a leader in the Lesch-Nyhan community and works tirelessly to support caregivers and patients.

Jareb began experiencing symptoms of Wilson disease when he was a preteen. Today, he uses diet and medication to manage his condition, and has made creative adaptation in his work life.

Leah found that living with myasthenia gravis (MG), an “invisible” disease, was often misunderstood by her friends and family. But with incredible strength and positivity, Leah has navigated through her hardships and now celebrates a community dedicated to uplifting rare disease patients.

Once AllStripes collects your medical records, how do we use them for research? One important step is verifying the completeness and depth of the data from each participant.

"As soon as I had the genetic results, I wanted to get it out to anyone who was willing to listen."

Noga Leviner founded PicnicHealth after managing a Crohn's disease diagnosis to give patients more control navigating their own care. PicnicHealth does the hard work of tracking down medical records for patients, giving them access to their complete records, organized in one place. And with PicnicHealth, patients can choose to contribute their data to scientific research, which helps life sciences researchers accelerate breakthroughs in care.

PicnicHealth gives people with lupus more control navigating their medical care. PicnicHealth does the hard work of tracking down medical records for patients, giving them access to their complete records, organized in one place. And with PicnicHealth, patients can choose to contribute their data to scientific research, which helps life sciences researchers accelerate breakthroughs in care.

PicnicHealth is proud to partner with WeAreILL to empower women of color living with MS to get better access to their medical records and to contribute to research on their terms.

Gradually, PSP patients can have trouble completing everyday activities. Here’s a compiled list of items that PSP community members have shared.

Deborah is determined to help other families impacted by GM1 gangliosidosis to honor her sons, Luke and Isaiah.

PicnicHealth is excited to announce $35 million in funding, including a $25 million Series B led by Felicis Ventures, and a previously-unannounced $10 million Series A led by Amplify Partners, which also participated in the Series B.

What is safe to eat when you have ulcerative colitis? Learn about what foods to avoid to help in managing ulcerative colitis and other inflammatory bowel diseases.

Awareness days, weeks or even months are opportunities to rally a community and raise funding to advance the mission of nonprofit organizations that serve individuals living with a rare disease and their families.

"I’m not someone who has ever asked for help," says Kim, whose son Charlie lives with a rare disease referred to as SLC6A1. "I don’t do it in any other aspect of my life. But in this situation, I have no choice: ask for help or watch my son suffer.”

Learn about common guidelines for managing sickle cell disease.

Lara and Ron have had to make tough decisions in the fight against their son’s rare disease, including whether to undergo a potentially risky brain surgery.

Announcing the official launch of PicnicHealth's scientific research platform. PicnicHealth is gathering medical records data from proactively consenting patients, de-identifying it to ensure patient data privacy, and then aggregating it with the goal of deepening the scientific understanding of serious diseases. This data, known as “real-world data” helps researchers better understand what diseases look like outside of the controlled setting of clinical trials where research has traditionally been done.