PostedNovember 23, 2020
Jareb began experiencing symptoms of Wilson disease when he was a preteen. He uses diet and medication to manage his condition, and has forged a career as a dedicated worker.
PostedNovember 23, 2020
Michelle lost both of her sons to a rare condition called Lesch-Nyhan disease. Almost a decade later, she remains a leader in the Lesch-Nyhan community and works tirelessly to support caregivers and patients.
PostedNovember 13, 2020
AllStripes’ co-founder Onno Faber is a featured speaker at the festival, a free virtual event open to anyone interested in rare disease.
UpdatedOctober 30, 2020
Leah found that living with myasthenia gravis (MG), an “invisible” disease, was often misunderstood by her friends and family. With her incredible strength and positivity, Leah has navigated through her hardships and now celebrates a community dedicated to uplifting rare disease patients.
UpdatedOctober 23, 2020
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.
UpdatedOctober 13, 2020
After Lisa’s daughter, Jessica, was officially diagnosed with NF2, she knew she would have to be her biggest fighter. Joining AllStripes was Lisa’s way to take control and make an impact for NF2 research.
UpdatedOctober 9, 2020
Gradually, PSP patients can have trouble completing everyday activities. Here’s a compiled list of items that PSP community members have shared.
UpdatedSeptember 4, 2020
Deborah is determined to help other families affected by GM1 gangliosidosis to honor her sons, Luke and Isaiah.
UpdatedAugust 28, 2020
Clinton is determined to make noise and be heard for his son’s rare genetic disease: cystinosis.
UpdatedAugust 14, 2020
Kim is “fighting like a mother” for a rare genetic disease that is so rare, it doesn’t yet have a name and is referred only by the gene it’s on.
UpdatedOctober 16, 2020
Awareness days, weeks or even months are opportunities to raise awareness, rally a community and raise funding to advance the mission of nonprofit organizations that serve patients living with a rare disease and their families.
UpdatedJuly 24, 2020
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.
UpdatedJune 25, 2020
Randy won’t let inclusion body myositis (IBM), a disease that is causing the degeneration of his muscles, reduce his life.
UpdatedJune 18, 2020
Nicole’s daughter Olivia is living with a rare disease, CDKL5, that often requires children to take three or more medications to manage frequent seizures.
UpdatedJune 5, 2020
Each month, we spotlight one of our inspiring foundation partners dedicated to pushing forward progress for their communities.
UpdatedJune 4, 2020
Gary was diagnosed with a rare disease that often presents symptoms similar to Parkinson’s disease. He’s struggled with the condition, but also the feelings of isolation and frustration that accompany the symptoms.
UpdatedMay 28, 2020
Douglas and Christine forged their own path to find answers for their daughter when she was diagnosed with the rare disease GM1.
UpdatedMay 14, 2020
Mary and Jerry’s lives were forever changed when Jerry was diagnosed with the rare disease PSP. He made generous choices to try to ensure future PSP patients and caregivers don’t go through what they did.
UpdatedMay 8, 2020
Myositis Support and Understanding Association provides patients and caregivers platforms, programs and resources they need to thrive while living with a chronic and debilitating rare disease.
UpdatedApril 30, 2020
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 patients and mental health support.
UpdatedApril 23, 2020
People affected by chronic and rare conditions already know what it’s like to make big adjustments for health reasons, so they have a unique perspective during the challenges of COVID-19.
UpdatedApril 16, 2020
Today, the AllStripes team is thrilled to announce we’ve raised $14 million in Series A financing.
UpdatedApril 16, 2020
SAN FRANCISCO, April 16, 2020 -- AllStripes, a healthcare technology company dedicated to accelerating drug research for patients with rare diseases, today announced that it has raised $14 million in Series A financing.
UpdatedMarch 26, 2020
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.
UpdatedMarch 12, 2020
People who are already managing existing health conditions may need to take some extra precautions and make plans to keep their care consistent.
UpdatedFebruary 28, 2020
In honor of Rare Disease Day, we’re sharing a behind-the-scenes look at what inspires AllStripes staff members to push for advancements in rare disease research.
UpdatedFebruary 20, 2020
Patient registries can be an important tool to centralize information about a rare disease community. AllStripes is a research platform that can complement registry efforts by providing the audit-trailed and research-ready data needed to push research forward.
UpdatedFebruary 13, 2020
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.
UpdatedJanuary 30, 2020
Mindy has been a little warrior since day one. She, and her family, are managing a rare condition called ITP that could be life-threatening, or could resolve itself in time.
UpdatedJanuary 22, 2020
Rhonda created Myositis Warrior as a fresh way to raise awareness for inclusion-body myositis, known as IBM, and other rare diseases.
UpdatedJanuary 9, 2020
Thaddeus, 6, has a rare disease called NF1. His parents have to manage his care with the limited knowledge available about the disease.
UpdatedDecember 12, 2019
Fred has tried medications, platelet transfusions and surgery, but won’t let his condition keep him from the most important life experiences.
UpdatedNovember 14, 2019
For rare diseases, it’s critical to learn more about a condition before effective trials can be developed. That’s where a “natural history study” comes in.
UpdatedOctober 10, 2019
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.
UpdatedSeptember 26, 2019
Drug development for any disease is a complex, expensive and slow process. Layer on top of that developing drugs for a condition that impacts a limited population, and we as a rare-disease community are up against some unique challenges.
UpdatedSeptember 12, 2019
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.
UpdatedAugust 8, 2019
Elise Drake-Esposito 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.
UpdatedJuly 18, 2019
Ashly Wiebelt built her career as a speech therapist helping children with special needs. Now, she’s advocating for her own child with special needs, and fighting for his life.
PostedMarch 4, 2019
by Kristina Cotter, PhD, CGC
A research consent is designed to protect patients from participating in research they don’t understand or agree to. In our research consent, we describe what AllStripes Research is and tell you about any associated benefits or risks. We set up our research this way because we think it’s important to get your permission before we do any research using your information.
UpdatedApril 23, 2019
by Talea Miller
You may have questions about how AllStripes keeps your health information safe and secure—many other patients have reached out about this very thing. We take security and data privacy very seriously—in fact, it’s one of our top priorities. We created a summary below to help you understand our privacy and security efforts. We work alongside experts in data privacy and security to ensure that the proper controls are in place for the data you trust us with. We know how sensitive your health information is and how big a deal unauthorized access would be. Please feel free to reach out to us about anything relating to data privacy and security. Below we explain in more detail how we keep your data safe.