PicnicHealth partners with life science companies, academic research institutions, and health systems organizations in applying real world evidence for the advancement of patient care and treatment. We produce high quality multimodel datasets that cover a patient’s entire medical journey and are more comprehensive and customizable than existing sources of real-world data.

Deborah was experiencing symptoms of myasthenia gravis for four years before receiving a diagnosis — right before her vow renewal.

Autism is a behavioral diagnosis, so it’s possible for individuals with rare single-gene disorders to receive an autism diagnosis on top of their rare disease diagnosis.

A seizure and a medical conundrum from her husband’s past were the clues to a condition that affects Jessie’s whole family.

In the span of a month, Al was diagnosed with late-onset Tay-Sachs disease and his fiancée broke off their engagement. Here's how he learned to surrender to the flow.

For many rare diseases, early diagnosis and treatment is crucial.

Leeya explains how a difficult time in her life allowed her to realize who her true friends are — and steered her toward advocating for the rare disease community on social media.

Jenny’s son, Victor, was born with an enlarged cheek, which turned out to be a fatty overgrowth caused by a mutation on Victor’s PIK3CA gene.

Manuel sees the people around him as his greatest strength, and believes that finding the IBM community has given him purpose.

Today, Ben is 5 years old. Stephan describes him as the funniest and smartest person he knows and a “very wise soul.”

“I miss her so much but know she is in a better place eating cookies, talking walks, playing piano and playing Cribbage and Yahtzee with her dad,” says Larry, whose wife Rachel passed away due to complications of PSP.

One of the best ways Matt has found to adjust to his daughter Wynne's diagnosis is by connecting with others in the Kleefstra community.

In his own words, Thomas shares his experience growing up with Crigler-Najjar Syndrome, Type 1, and receiving a liver transplant that changed his world.

“Gratitude for what we have today (however flawed by symptoms) is always preferable to wasting your emotional strength on lamenting a loss of function."

Throughout the month of February, members of the rare disease community have been sharing what it’s really like using the hashtag #RareDiseaseTruth.

Whether you’ve recently been diagnosed or you’ve been living with a rare disease for a while, managing your condition comes with some powerful truths. Here are 13 experiences commenters shared with #RareDiseaseTruth.

PicnicHealth is working on new research that uses data from medical records to better understand the day-to-day challenges of living with sickle cell. And we're looking for volunteers with sickle cell disease to help.

In her own words, Kristen shares her CCM3 syndrome journey and what she's learned about the rare disease community.

Yohanna’s son, Xander, was finally diagnosed with a rare condition known as SLC6A1 when he was two. Now, she has a message for other parents currently searching for a diagnosis.

In his own words, Brandon writes about how he and his sister began caring for his mom, a former oncology nurse, when they were still entering adulthood themselves.

Lindsey’s journey with her rare condition has evolved, and so has her ability to fiercely advocate for her needs as a patient and person.

Stephen first began experiencing symptoms of myasthenia gravis when he noticed his vision was blurred while driving home from work.

Sherman, who has CIDP, shares his advice for others in the rare disease community.

In 2018, Amy was diagnosed with VCP disease. While adjusting to life with a rare disease hasn’t been easy, she has become more spiritual and focused on self-care.

She hopes that her example will show others that it is possible to live a happy life with CLOVES syndrome.