In celebration of Rare Disease Month, we are thrilled to shine a spotlight on Change Champions, dedicated partners, and organizations making a lasting impact on rare disease research throughout the year. At the forefront of this movement is Rare Patient Voice, a remarkable resource founded with a singular mission – to provide patients and family caregivers a platform to be heard by actively participating in diverse research endeavors, including rare diseases.

In honor of Rare Disease Awareness Month, we're thrilled to kick off our #ShareYourRare campaign. We believe that your stories matter, and through #ShareYourRare, we want to highlight the often-overlooked challenges and stories of those who are living with a rare condition.

Navigating the complex medical landscape is an imposing journey, and it becomes even more challenging when your child is diagnosed with a rare condition like Achondroplasia.

In the heart of Urbana, Ohio, Lydia and her husband Charlie embarked on an unexpected journey that began with the arrival of their daughter, Dagny. Diagnosed with achondroplasia, their story is one of discovery, resilience, and unwavering love.

In a world where each child's journey is unique, Brynn’s story stands out for its strength and resilience. Diagnosed with achondroplasia, Brynn, and her family, have navigated a path filled with challenges, discoveries, and immense love.

The journey of Janet's family into the world of achondroplasia began unexpectedly when their baby girl was diagnosed at four months old.

We’re thrilled to share that #PicnicHealthGivesBack, our annual giving campaign, has returned this year. From now until January 5, 2024, we’re donating to The American Kidney Fund (AKF) and The Chandler Project for each new PicnicHealth sign-up, up to $6k. Join PicnicHealth today to make an even bigger impact.

Life with IgA Nephropathy: What to expect after diagnosis

We partnered with The Chandler Project for an empowering achondroplasia community webinar on how to advocate for your child in a medical setting!

CAHtalog: The Power of Medical Records in Research is a brief presentation that highlights the CAHtalog registry – an effort sponsored by Neurocrine and supported by CARES and PicnicHealth.

The first of November has sort of always been the mental marker for me to “up my game” for the Holiday Season. Pumpkin lattes and all things Gourd related are being shoved down our throats. I used to like Pumpkin Spice but now I think it’s safe to say the Pumpkin Craze has gone a bit overboard. Nevertheless I still have love for those that get suckered into the few months of insane commercialism and Seasonal Trends.

We are excited to announce the launch of PicnicStudies! With this new solution, run faster and more efficient observational studies from end-to-end.

In October 2022, at the young age of 30, Rachel found herself facing a life-altering diagnosis. While most people her age were enjoying reaching the toddler phase of parenting, she was plunged into a world of uncertainty, fear, and guilt. Her husband, a dedicated United States Navy member, was about to embark on an extended sea duty, leaving her to navigate the turbulence of a cancer diagnosis with two young children by her side.

Join us for a cutting-edge webinar on the intersection of decentralized research and real-world data. Learn from industry experts about the evolving drug development landscape.

PicnicHealth announced the acquisition of AllStripes, a platform dedicated to generating evidence about the rare disease community. This strategic consolidation establishes PicnicHealth as the leading patient-centric evidence generation partner within a rapidly evolving life sciences landscape.

PicnicHealth announced the acquisition of AllStripes, a platform dedicated to generating evidence about the rare disease community. This strategic consolidation establishes PicnicHealth as the leading patient-centric evidence generation partner within a rapidly evolving life sciences landscape.

Early detection of breast cancer can make all the difference in terms of treatment options and outcomes. In addition to regular self-exams and OBGYN appointments, having a complete picture of your family history is one of the best tools you have at your disposal.

Life isn’t always fair. You have just turned 15 ½ and you’ve lost feeling in your lower legs. You have spinal cord compression. Lower back surgery is absolutely necessary. I know you think that this is the end of the world, but some miracles can happen. You will experience even harder things in life.

I strongly believe that age is just a number.There was a point in my cancer journey when I bargained with God. I asked him why he allowed me to get diagnosed in my twenties and wished he could have changed the timing to at least my forties or fifties.

In this engaging webinar, Clara, Heather, and Dan lead a discussion on the exciting ways stakeholders are optimizing registries to enhance research insights. The session explores the concept of the "Reimagined Registry" and delves into the characteristics of traditional registries. Patient registries are introduced as organized systems utilizing observational study methods to collect standardized patient information. These registries play a pivotal role in providing valuable real-world data for diverse research needs and inquiries. Join us in uncovering the potential of reimagined registries for research excellence.

What’s the most favorite thing about yourself? My answer used to be my thick hair. It was organically long, healthy, and shiny. I used to follow the Asian stereotype where nothing about my body was #thiccccc, except my hair.

Why You're Never 'Done' Even After Breast Cancer Treatment

Get to know Sara Snell Taylor, Senior Epidemiologist at PicnicHealth and discover how she leverages real-world data to improve patient outcomes

PicnicHealth is thrilled to announce our entry into the real-world data market for oncology. Leveraging our successes in chronic and rare diseases, we're now dedicated to advancing oncology research by collaborating directly with people living with cancer.

Roche has selected PicnicHealth as its partner to study Alzhemier’s disease (AD) in real world patients through their latest project, EMPOWER AD. The partnership leverages PicnicHealth’s end-to-end patient-centric approach to building registries from recruitment, to medical records retrieval, and machine learning (ML)-driven, human-curated data abstraction.