Blog

PostedNovember 8, 2021 · 4 minute read

Haley loves singing and horses, but watching little pieces of her fall away has been hard. It’s why we founded the Haley’s Heroes Foundation.

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PostedNovember 1, 2021 · 9 minute read

Read the full transcript of a recorded conversation between Sylvia and Mubina, whose mothers had the same rare disease.

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PostedNovember 1, 2021 · 2 minute read

Listen to Sylvia and Mubina explain how they bonded for life over caring for their mothers, who both had the rare disease progressive supranuclear palsy.

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PostedNovember 1, 2021 · 4 minute read

I had to learn to sleep without the phototherapy lights I’d used pretty much my whole life.

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PostedOctober 25, 2021 · 5 minute read

The esteemed pediatric neurologist spoke to AllStripes about Niemann-Pick disease type C research, the importance of medical records — and hope.

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PostedOctober 18, 2021 · 4 minute read

Four members of the rare disease community describe their experiences with coordinated health care.

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PostedOctober 12, 2021 · 4 minute read

“There are times when it’s not fun, but there are benefits you’ll see once you accept the diagnosis and begin to meet others.”

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PostedOctober 12, 2021 · 3 minute read

A roundup of thoughtful and energetic takeaways, courtesy of our AllStripes Ambassadors.

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PostedSeptember 30, 2021 · 3 minute read

Lara is the mother of Eden, a bubbly 13-year-old with a rare condition. After years of symptoms, Eden was diagnosed with Kleefstra syndrome at 8 years old.

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PostedSeptember 19, 2021 · 2 minute read

This partnership will support multiple Leigh syndrome research projects and fuel development of future treatments.

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UpdatedSeptember 13, 2021 · 4 minute read

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

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PostedSeptember 7, 2021 · 3 minute read

Community builder Ade Adeyokunnu refuses to let sickle cell keep him from living.

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PostedAugust 30, 2021 · 5 minute read

Some basic information for anyone with 504s or IEPs on their mind this back-to-school season.

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PostedAugust 30, 2021 · 2 minute read

This week, we’re exploring just a few of grief’s many forms.

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PostedAugust 24, 2021 · 4 minute read

The AllStripes team is thrilled to announce we’ve raised $50 million in Series B financing to greatly expand our impact and continue building the leading research platform in rare disease.

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PostedAugust 24, 2021 · 4 minute read

Lux Capital led funding, joined by JAZZ Venture Partners. Financing will advance AllStripes’ capabilities and launch new rare disease research programs.

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PostedAugust 24, 2021 · 2 minute read

AllStripes officially reincorporated as a Public Benefit Corporation (PBC) in August 2021. A benefit corporation is a for-profit company that weighs social good in its business decision-making.

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UpdatedAugust 23, 2021 · 2 minute read

Learn more about the AllStripes Ambassador Program and how you can be involved.

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PostedAugust 23, 2021 · 3 minute read

Blaine has fully embraced the community that helped him through the early years of his diagnosis with IBM, a rare muscle disease.

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PostedAugust 16, 2021 · 4 minute read

Only 5 percent of rare diseases have approved treatments. How could drug repurposing help?

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PostedAugust 16, 2021 · 1 minute read

This week, genetic technologies, parenting and high-risk children.

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PostedAugust 9, 2021 · 3 minute read

Barry is a gregarious, outgoing jokester. He’s also leading the charge for adult GM2 research.

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PostedAugust 9, 2021 · 2 minute read

This week, Finding Dory and disability representation, the time tax, and insight on giving and receiving support.

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PostedAugust 2, 2021 · 4 minute read

After Alexis began experiencing eye pain, a doctor predicted she had a long diagnostic journey in front of her. He was right.

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PostedAugust 2, 2021 · 1 minute read

Content curated with the rare disease community in mind.

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PostedJuly 26, 2021 · 3 minute read

To me, they mean self-confidence, loving my disabled body fully and unapologetically taking up space.

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PostedJuly 26, 2021 · 2 minute read

Content curated with the rare disease community in mind.

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PostedJuly 26, 2021 · 4 minute read

After Dinah’s daughter was diagnosed with a rare condition that causes brain lesions, she went looking for clues about what might lie ahead.

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PostedJuly 19, 2021 · 2 minute read

Content curated with the rare disease community in mind.

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PostedJuly 19, 2021 · 3 minute read

Julie’s daughter Amber, who has Kleefstra syndrome, went through a period of regression that stumped her doctors.

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PostedJuly 12, 2021 · 2 minute read

Content curated with the rare disease community in mind.

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PostedJuly 12, 2021 · 3 minute read

Karen would rather people take an interest in Doug, who’s living with Lesch–Nyhan syndrome, than stare at him.

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PostedJune 25, 2021 · 2 minute read

Content curated with the rare disease community in mind.

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PostedJune 25, 2021 · 3 minute read

A teenager with Gorham-Stout disease is pushing past her own discomfort to help others.

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PostedJune 18, 2021 · 3 minute read

The TechPioneer award goes to early to growth-stage companies poised to have a significant impact on business and society.

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PostedJune 18, 2021 · 3 minute read

Joe is determined to help his family, one meal at a time.

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PostedJune 18, 2021 · 3 minute read

How making a friend in the rare-disease community led to an accurate diagnosis of PROS.

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PostedJune 11, 2021 · 3 minute read

Andrea was rejected for professional dance jobs because of a condition that caused growths to develop on her face (PROS), but she refused to let society’s standard of beauty stop her from living out her passion.

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PostedMay 31, 2021 · 3 minute read

Scott was diagnosed with IBM four years ago, but works hard to keep doing the things he enjoyed before.

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PostedMay 30, 2021 · 3 minute read

Shaye was forced to become an HDFN expert and advocate while still pregnant and navigating a new diagnosis.

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PostedMay 28, 2021 · 3 minute read

When Elizabeth went to a doctor to treat her sore throat, she discovered that it was actually a symptom of a rare disease she’d unknowingly been living with her whole life.

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PostedMay 21, 2021 · 5 minute read

As physicians, it was agonizing for Michael’s parents to watch him suffer from unexplained symptoms, without a diagnosis or path to make everything better.

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PostedMay 21, 2021 · 3 minute read

When Sarah discovered a large dent on top of her head, it took several doctors to figure out that she had Gorham-Stout disease, which only affects 200 people in the world.

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PostedMay 21, 2021 · 3 minute read

Kevin Dooley founded Cure IBM in 2017 to raise awareness of inclusion body myositis (IBM) and encourage research for an effective treatment and cure.

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PostedMay 7, 2021 · 3 minute read

Caitrin lost her daughter to Sandhoff disease, but wants to advance treatments for future patients.

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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.

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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.

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PostedApril 20, 2021 · 2 minute read

The studies will leverage AllStripes’ real-world evidence platform.

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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).

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.”

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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”

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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.

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PostedFebruary 12, 2021 · 1 minute read

Rare patients and caregivers in the U.K. can now participate in AllStripes research towards new treatments.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.”

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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.

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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.

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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.

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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.

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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.

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PostedDecember 30, 2020 · 1 minute read

View highlights from our research programs, community and team in 2020.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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