2021 was another exciting year at PicnicHealth. We’re looking back and celebrating all that we accomplished with our patient volunteers and life science partners. Take a look with us. And thank you for coming along on our journey.

This year, the theme focuses on Black Health and Wellness — an especially timely focus.

The same goes for NPC research — we need community participation to move it forward.

I’ve realized how much families like mine can help families currently dealing with the everyday challenges of NPC.

As the founder of Myositis Support and Understanding Association (MSU), I’ve seen and experienced how far-ranging the impact of living with a rare disease like dermatomyositis can be.

Because of what I’ve been through as a rare patient, I’m driven to help people facing similar challenges.

Having dermatomyositis is life-changing, and you never know what your new normal is going to be.

A conversation with three AllStripes Ambassadors for the ALD research program.

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.

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.

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.

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.

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

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.

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

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.