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.