he Evidence Base and PicnicHealth partnered to put Data Completeness In Focus. Dan Drozd, MD, PicnicHealth’s Chief Medical Officer sat down with Darcy Hodge, Editor of the Evidence Base to talk about the importance of data completeness, unstructured data and additional factors that impact the generation of high-quality real-world evidence. Listen to the podcast, part of the In Focus feature by visiting The Evidence Base. A transcript of the interview appears below.

The esteemed pediatric neurologist spoke to AllStripes about Niemann-Pick disease type C research, the importance of medical records — and hope.

Four members of the rare disease community describe their experiences with coordinated health care.

“There are times when it’s not fun, but there are benefits you’ll see once you accept the diagnosis and begin to meet others.”

A roundup of thoughtful and energetic takeaways, courtesy of our AllStripes Ambassadors.

Lara is the mother of Eden, a bubbly 13-year-old with a rare condition. After years of symptoms, Eden was diagnosed with Kleefstra syndrome at 8 years old.

Community builder Ade Adeyokunnu refuses to let sickle cell keep him from living.

Some basic information for anyone with 504s or IEPs on their mind this back-to-school season.

This week, we’re exploring just a few of grief’s many forms.

Blaine has fully embraced the community that helped him through the early years of his diagnosis with IBM, a rare muscle disease.

Only 5 percent of rare diseases have approved treatments. How could drug repurposing help?

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

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

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

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

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

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.

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.

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

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

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.

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

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

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.

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.

“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.