PostedMay 7, 2021 · 3 minute read
Caitrin lost her daughter to Sandhoff disease, but wants to advance treatments for future patients.
PostedMay 7, 2021 · 3 minute read
Mandy was born with overgrown lower limbs and a club foot. It took 30 years to find out the true cause.
PostedMay 7, 2021 · 3 minute read
Mick may have lost some strength to CIDP, but he’s found ways to remain positive amidst a crushing diagnosis.
PostedApril 20, 2021 · 2 minute read
The studies will leverage AllStripes’ real-world evidence platform.
PostedApril 20, 2021 · 4 minute read
May is Myositis Awareness Month! Myositis is an umbrella condition consisting of five rare subtypes, including inclusion body myositis (IBM).
PostedApril 30, 2021 · 2 minute read
Doctors initially thought Danielle’s son had cerebral palsy, but he was eventually diagnosed with the rare disease Lesch-Nyhan after genetic testing.
PostedApril 22, 2021 · 3 minute read
When Kristen describes her son’s rare condition, Infantile Tay-Sachs disease, to her friends, she tells them to imagine Alzheimer’s or dementia in a baby.
PostedApril 23, 2021 · 4 minute read
We’ve rounded up some of the rare disease podcasts we love that are still creating new and upcoming episodes.
PostedApril 9, 2021 · 4 minute read
Preparing for doctor’s appointments is not typically an easy feat for people impacted by rare disease. Five Allstripes ambassadors shared their top tips.
PostedApril 8, 2021 · 3 minute read
Diane and Wayne used to be ballroom dancers. Now, Diane doesn’t have the muscle control or balance to dance.
PostedApril 1, 2021 · 3 minute read
AllStripes Ambassador Deborah was experiencing symptoms of myasthenia gravis for four years before receiving a diagnosis – right before her vow renewal.
PostedApril 1, 2021 · 2 minute read
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.
PostedMarch 26, 2021 · 2 minute read
In the span of a month, Al was diagnosed with late-onset Tay-Sachs disease and his fiancée broke off their engagement. Coping with his diagnosis and the loss of his partner, Al fell into a major depression: “Having this diagnosis on top of a break up was very difficult.”
PostedMarch 26, 2021 · 3 minute read
A seizure and a medical mystery from her husband’s past were the clues to a condition that affects Jessie’s whole family.
PostedMarch 19, 2021 · 5 minute read
Millions of babies undergo newborn screening using a few drops of blood from their heel to test for certain genetic, hormonal, functional and metabolic disorders, many of which are considered rare diseases.
PostedMarch 19, 2021 · 3 minute read
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.
PostedMarch 19, 2021 · 3 minute read
Leeya describes her rare condition, generalized lymphatic anomaly (GLA), as a disease that causes her lymphatic system to attack her body and erode her bones from the inside out.
PostedMarch 11, 2021 · 4 minute read
Larry’s wife Rachel was diagnosed with progressive supranuclear palsy after a series of symptoms that had caused confusion, and some tension, in the family.
PostedMarch 11, 2021 · 3 minute read
In 2019, Manuel was diagnosed with inclusion body myositis (IBM), a rare, inflammatory, degenerative muscle disease. He describes his symptoms as insidious.
PostedMarch 11, 2021 · 2 minute read
One year. That’s how long Stephan and his wife waited to receive whole exome sequencing results for their son, Ben.
PostedMarch 5, 2021 · 4 minute read
Matt wants to see ‘every single family who has Kleefstra enroll’ in AllStripes to work towards a cure for their community.
PostedMarch 5, 2021 · 4 minute read
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.
PostedFebruary 25, 2021 · 4 minute read
Throughout the month of February, rare disease patients, caregivers, family members and friends, have been sharing what it’s really like being part of the rare disease community using the hashtag #RareDiseaseTruth.
PostedFebruary 25, 2021 · 4 minute read
When Charles was in his early 30s he developed a twitch in his arm. His doctor ordered a CT scan, which showed Charles had a cerebral cavernous malformation, or a lesion on his brain made of abnormal blood vessels.
PostedFebruary 19, 2021 · 3 minute read
Yohanna’s son, Xander, was finally diagnosed with a rare condition known as SLC6A1 when he was two. Her message to parents searching for a diagnosis: “Keep looking, keep working and keep fighting”
PostedFebruary 19, 2021 · 7 minute read
At the age of 25, Kristen discovered that the condition she struggled with since childhood had been misdiagnosed, resulting in unnecessary surgeries. In her own words, Kristen shares her CCM3 syndrome journey.
PostedFebruary 12, 2021 · 1 minute read
Rare patients and caregivers in the U.K. can now participate in AllStripes research towards new treatments.
PostedFebruary 12, 2021 · 3 minute read
Lindsey’s journey with her rare condition has evolved, and so has her ability to strongly advocate for her needs as a patient and person.
PostedFebruary 12, 2021 · 2 minute read
Stephen first began experiencing symptoms of myasthenia gravis when he noticed his vision was blurred and appeared doubled while driving home from work.
PostedFebruary 12, 2021 · 4 minute read
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.
PostedFebruary 5, 2021 · 3 minute read
Sherman has CIDP, a rare disease that attacks the peripheral nervous system. He advises fellow rare disease patients to find their support system early.
PostedFebruary 5, 2021 · 3 minute read
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.
PostedJanuary 28, 2021 · 3 minute read
Lindsay was born with an overgrown leg and foot as well as disfigured toes. At the time, her doctor thought she was just suffering from harmless swelling, but it turned out to be a rare overgrowth disorder.
PostedJanuary 22, 2021 · 4 minute read
John was diagnosed with late-onset Tay-Sachs, a type of GM2 Gangliosidosis disease. He is raising awareness about the condition, while he continues to pursue his passions.
PostedJanuary 22, 2021 · 3 minute read
When McKenzie’s daughter, Mia, was diagnosed with SURF1 Leigh syndrome, McKenzie blamed herself for it. “Because it’s inherited,” she explains, “you get that feeling that you contributed in some way.”
PostedJanuary 15, 2021 · 4 minute read
Theresa’s children, both in their 40s, were recently diagnosed with Alpha-mannosidosis after almost a lifetime of experiencing symptoms.
PostedJanuary 14, 2021 · 3 minute read
One wrong click of the mouse led to Tim unknowingly publishing his online journal about progressive supranuclear palsy for all the world to see. He never imagined what ended up happening next.
PostedJanuary 14, 2021 · 4 minute read
Kim’s son James began experiencing strange symptoms while away at college. The mystery condition began taking over his life, and eventually Kim tracked down what was happening.
PostedJanuary 6, 2021 · 2 minute read
When Andrea was diagnosed with late-onset Tay-Sachs disease at 33, she didn’t know what to expect. Today, life looks different, but she still enjoys the hobbies she loves the most.
PostedJanuary 4, 2021 · 3 minute read
Taysha will leverage AllStripes’ technology platform to support development of TSHA-104, a gene therapy for SURF1-associated Leigh syndrome.
PostedDecember 30, 2020 · 1 minute read
View highlights from our research programs, community and team in 2020.
PostedDecember 9, 2020 · 4 minute read
Learn more about the causes, symptoms and treatments available for Wilson disease, a rare condition that causes free copper to build up in the liver.
PostedDecember 4, 2020 · 3 minute read
Ever since her son, Will, was diagnosed with SURF1 Leigh syndrome, Kasey has gone to great lengths to drive forward research not only for his disease, but for other rare diseases as well.
PostedNovember 23, 2020 · 3 minute read
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 · 3 minute read
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 · 2 minute read
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 · 3 minute read
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 · 3 minute read
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 · 3 minute read
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 · 3 minute read
Gradually, PSP patients can have trouble completing everyday activities. Here’s a compiled list of items that PSP community members have shared.
UpdatedSeptember 15, 2020 · 2 minute read
Today, we revealed our new look, logo and name to the world: RDMD is now AllStripes Research!
UpdatedSeptember 4, 2020 · 3 minute read
Deborah is determined to help other families affected by GM1 gangliosidosis to honor her sons, Luke and Isaiah.
UpdatedAugust 28, 2020 · 4 minute read
Clinton is determined to make noise and be heard for his son’s rare genetic disease: cystinosis.
UpdatedAugust 14, 2020 · 3 minute read
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.
UpdatedMarch 26, 2021 · 4 minute read
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 · 4 minute read
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 · 3 minute read
Randy won’t let inclusion body myositis (IBM), a disease that is causing the degeneration of his muscles, reduce his life.
UpdatedJune 18, 2020 · 3 minute read
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 · 3 minute read
Each month, we spotlight one of our inspiring foundation partners dedicated to pushing forward progress for their communities.
UpdatedJune 4, 2020 · 2 minute read
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 · 4 minute read
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 · 3 minute read
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 · 3 minute read
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 · 3 minute read
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 · 4 minute read
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 · 1 minute read
Today, the AllStripes team is thrilled to announce we’ve raised $14 million in Series A financing.
UpdatedApril 16, 2020 · 5 minute read
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 · 3 minute read
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 · 5 minute read
People who are already managing existing health conditions may need to take some extra precautions and make plans to keep their care consistent.
UpdatedFebruary 19, 2021 · 5 minute read
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 · 4 minute read
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 · 4 minute read
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 · 3 minute read
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 · 3 minute read
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 · 3 minute read
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 · 3 minute read
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 · 4 minute read
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 · 3 minute read
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 · 5 minute read
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 · 3 minute read
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 · 3 minute read
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 · 3 minute read
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 · 2 minute read
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.
UpdatedSeptember 25, 2020 · 2 minute read
Learn more about the AllStripes Ambassador Program and how to get involved.
UpdatedApril 23, 2019 · 4 minute read
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.