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.