After my son Lincoln was diagnosed, I started connecting with others all over the world about their PROS journeys.

Matthew and his older brother, Michael, enjoy goofing around together — just ask them what happened with a name tag at the National Institutes of Health!

As the founder of Sickle Cell Reproductive Health Education Directive, I’m fighting to end disparities and offer resources I wish I'd been able to access earlier on my infertility journey.

It’s an exciting time for Alzheimer’s disease research. The FDA approved the first new drug for Alzheimer’s in nearly 20 years in June 2021, and other potential treatments, targeting amyloid plaques in the brain, are making their way through clinical trials.1, 2 It’s a glimmer of hope for Alzheimer’s patients, who number over 6 million in the U.S. alone.

Bethany, the co-founder of the Allo Hope Foundation, describes how her experience with alloimmunization and HDFN changed her life forever.

Life with Roya means our family has to just let go a little bit and be in the present.

Talking to other parents in the IRF2BPL community might not immediately change our situation, but it does validate our family’s experience with this ultra rare condition.

PicnicHealth is excited to announce our Holiday 2021 Donation Campaign. PicnicHealth is donating to patient advocacy groups everytime a patient joins a PicnicHealth research study until January 2, 2022.

Let’s face it: There’s a lot to manage when you embark on a caregiving journey for someone with Alzheimer’s disease. Whether you’re just starting out or you’re well along the path, there are symptoms to monitor, appointments to navigate, medications to manage, and a whole lot more. It’s easy to become overwhelmed—but a few strategic moves can go a long way toward alleviating stress and lightening your caregiver load. The following five tips can be your guide to supporting your loved one—and yourself—through the twists and turns of Alzheimer’s disease.

We’re beginning a series: “Good Data Is”, where we’ll take a look at how to build good data and explore how best to optimize data capture, transformation and patient engagement

The American Society of Hematology (ASH) recently accepted two of our abstracts for the upcoming 63rd ASH Annual Meeting, which will be held December 11-14, 2021.

Long-chain Fatty Acid Oxidation Disorders (LC-FAOD) are a group of rare conditions that impair the body’s metabolism from breaking down certain fats from food into energy. Although there are an estimated 2,000-3,5000 people living with LC-FAOD in the U.S., researchers have limited data on how LC-FAOD progresses overtime and how it is managed in the real world.

Haley loves singing and horses, but watching little pieces of her fall away has been hard. It’s why we founded the Haley’s Heroes Foundation.

Listen to Sylvia and Mubina explain how they bonded for life over caring for their mothers, who both had the rare disease progressive supranuclear palsy.

These days, I'm managing a liver transplant rather than CN1.

The Lupus Foundation of America estimates that 1.5 million Americans, and at least 5 million people worldwide, have a form of Lupus.

We’re excited to announce the formation of our Scientific Advisory Board (SAB) and welcome inaugural members, including Robert Kaplan, PhD, Jeffrey Brown, PhD, and Milena Gianfrancesco, PhD, MPH.

Sickle cell disease is the most common inherited blood disorder in the United States. The Centers for Disease Control and Prevention estimate that 100,000 people are living with sickle cell in the US

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.

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.