Resources & Articles

Leah found that living with myasthenia gravis (MG), an “invisible” disease, was often misunderstood by her friends and family. But with incredible strength and positivity, Leah has navigated through her hardships and now celebrates a community dedicated to uplifting rare disease patients.

Once AllStripes collects your medical records, how do we use them for research? One important step is verifying the completeness and depth of the data from each participant.

"As soon as I had the genetic results, I wanted to get it out to anyone who was willing to listen."

Noga Leviner founded PicnicHealth after managing a Crohn's disease diagnosis to give patients more control navigating their own care. PicnicHealth does the hard work of tracking down medical records for patients, giving them access to their complete records, organized in one place. And with PicnicHealth, patients can choose to contribute their data to scientific research, which helps life sciences researchers accelerate breakthroughs in care.

PicnicHealth gives people with lupus more control navigating their medical care. PicnicHealth does the hard work of tracking down medical records for patients, giving them access to their complete records, organized in one place. And with PicnicHealth, patients can choose to contribute their data to scientific research, which helps life sciences researchers accelerate breakthroughs in care.

PicnicHealth is proud to partner with WeAreILL to empower women of color living with MS to get better access to their medical records and to contribute to research on their terms.

Gradually, PSP patients can have trouble completing everyday activities. Here’s a compiled list of items that PSP community members have shared.

Deborah is determined to help other families impacted by GM1 gangliosidosis to honor her sons, Luke and Isaiah.

PicnicHealth is excited to announce $35 million in funding, including a $25 million Series B led by Felicis Ventures, and a previously-unannounced $10 million Series A led by Amplify Partners, which also participated in the Series B.

What is safe to eat when you have ulcerative colitis? Learn about what foods to avoid to help in managing ulcerative colitis and other inflammatory bowel diseases.

Awareness days, weeks or even months are opportunities to rally a community and raise funding to advance the mission of nonprofit organizations that serve individuals living with a rare disease and their families.

"I’m not someone who has ever asked for help," says Kim, whose son Charlie lives with a rare disease referred to as SLC6A1. "I don’t do it in any other aspect of my life. But in this situation, I have no choice: ask for help or watch my son suffer.”

Learn about common guidelines for managing sickle cell disease.

Lara and Ron have had to make tough decisions in the fight against their son’s rare disease, including whether to undergo a potentially risky brain surgery.

Announcing the official launch of PicnicHealth's scientific research platform. PicnicHealth is gathering medical records data from proactively consenting patients, de-identifying it to ensure patient data privacy, and then aggregating it with the goal of deepening the scientific understanding of serious diseases. This data, known as “real-world data” helps researchers better understand what diseases look like outside of the controlled setting of clinical trials where research has traditionally been done.

Once devoted to his job, he is now devoted to supporting others with myositis.

Nicole's daughter Olivia is living with CDKL5, a rare disease characterized by frequent seizures. She has some advice for other parents raising rare children.

The Children’s Tumor Foundation, an AllStripes partner, is on a mission to show the value of patients’ voices and inclusion in the decision-making process.

Gary was diagnosed with PSP, a rare disease that often presents with symptoms similar to Parkinson’s disease. He’s struggled with the condition, but also the feelings of isolation and frustration that accompany it.

PicnicHealth doctor and founding team member Gillian Hanson uses her own experience as a patient to help the hemophilia community and other disease communities for PicnicHealth.

After their daughter Iris was diagnosed with the rare disease GM1, Douglas and Christine decided to find answers by forging their own path.

Mary and Jerry’s lives were forever changed when Jerry was diagnosed with the rare disease PSP. The choices he's made since aim to ensure future PSP patients and caregivers don’t go through what they did.

Learn about the latest research into new treatments for paroxysmal nocturnal hemoglobinuria (PNH), including promising new drugs that have recently been approved by the FDA or are in clinical trials.

Learn about the latest research into new treatments for hemophilia, including several promising new drugs that are in clinical trials.

Myositis Support and Understanding Association provides patients and caregivers the platforms, programs and resources they need to thrive while living with a chronic and debilitating rare disease.

Learn about the latest research into new treatments for lupus, including several promising new drugs that are in clinical trials.

Learn about PicnicHealth's mission to support research into new treatments for sickle cell disease, and how we hope to support the sickle cell community.

Learn about research that's being done to find new treatments for multiple sclerosis (MS), including drugs like ocrelizumab, fingolimod, and glatiramer acetate.

Learn about personal health records (PHRs), including different types, like standalone PHRs and tethered or connected PHRs.

Learn about the benefits of electronic health records (EHRs) and how they can make the medical system more efficient and provide better care for patients.

PicnicHealth explains what electronic health records and electronic medical records are, including the differences between EHRs vs EMRs.

Learn about the difference between IBD vs IBS. Inflammatory bowel disease includes diseases like Crohn's disease and ulcerative colitis, whereas irritable bowel syndrome can cause pain but doesn’t lead to life-threatening complications.

Learn where to find medications in your electronic health records (EHRs) and electronic medical records (EMRs).

Hannah’s family was secretive about her condition and didn’t tell her all the ways it was affecting her health. As an adult, she advocates for mental health support.

People impacted by rare conditions already know what it’s like to make big adjustments for health reasons. Here's how three members of the rare disease community are using their unique perspectives to meet the challenges of COVID-19.

Get an overview on electronic health records (EHRs) and what is contained in your EHRs.

Hear the story of a real PicnicHealth user, Mapillar, and how PicnicHealth helps her manage medical care for her three children with sickle cell disease (SCD) and keep track of medical records.

Learn what is an electronic medical records and who owns your medical records.

Learn where to find your immunization records from your medical records and how you can get them to keep track of your vaccinations and immunizations.

Human connection is critical to all our mental health during this time. Here are a few creative ways to remind your friends and family you care.

Learn what biotech companies are working on a potential coronavirus vaccine and other treatments. Current prospects include Gilead's remdesivir, Moderna Therapeutics mRNA vaccine, Ascletis Pharma ASC-09 and ritonavir, CanSino Ad5-nCoV vaccine, and Abbie's Kaletra.

Hear the story of a real PicnicHealth user, Mike, and how PicnicHealth helps him manage his medical care with multiple sclerosis (MS) and keep track of his medical records.

Learn about what it takes to develop a coronavirus vaccine. Coronavirus causes a disease known as COVID-19. There are a number of biotech companies working to develop a vaccine, including Moderna, Gilead, and more. However, the clinical trial process to ensure safety and effectiveness means that a vaccine likely wouldn't be able for 12 to 18 months at the earliest.

Hear the story of a real PicnicHealth user, John, and how PicnicHealth helps him manage his medical care and keep track of his medical records.

Hear about how Noga Leviner, Co-Founder and CEO of PicnicHealth, has managed Crohn's disease. She founded PicnicHealth to have a better way to manager her medical records and care.

PicnicHealth creates an easy-to-use, secure timeline of all of your medical records. Learn about what goes into the process of collecting your records and creating a timeline.

While there’s no cure or guaranteed way to prevent catching coronavirus, there are a number of steps that you can take to reduce your risk of exposure. Hear from an infection disease prevention doctor at PicnicHealth to learn what steps you can take to slow the spread of Covid-19.

Emily was so consumed with caring for her son, who has a rare disease called Hunter syndrome, that she neglected her own well-being and faced grave consequences. Now, she's determined to help others who might be in the same boat.

Mindy loves dance and gymnastics and has been a little warrior since day one. She, and her family, are managing a rare condition called ITP.

Rhonda created Myositis Warrior as a fresh way to raise awareness for inclusion-body myositis, known as IBM, and other rare diseases.