Resources & Articles

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 hemophilia, including several promising new drugs that are in clinical trials.

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.

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

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

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

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.

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

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

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.

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

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

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.

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.

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.

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.

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.

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.

Thaddeus is a smiley 6-year-old with the rare disease NF1. His parents have to manage his care with the limited knowledge available about the disease.

Fred has tried medications, platelet transfusions and surgery — and remains determined to keep having important life experiences.

The goal of a natural history study is to get a big picture view of how a disease develops and improve understanding of that condition. AllStripes can help organizations create high-quality natural history studies of rare conditions — which can feed research for years to come.

Dayna’s studies as a speech pathologist helped her push for a diagnosis for her father’s neurological condition, and gave him a voice as the disease progressed.

Drug development's existing challenges can be even more complex for rare conditions.

Carrie Szeles was told many times “you’re crazy” for thinking something was seriously wrong with her health. Now, she’s often told she doesn’t “look sick.” Through it all, she had to learn to be her own advocate and strongest supporter.

Elise was just weeks away from giving birth to her second daughter when she learned her five-year-old, Keira, had a rare, fatal genetic condition.

Ashly built her career as a speech therapist helping children with complex needs. Now, she’s advocating for her own child — and generations of her family to come.

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