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Together, We Are a Force
In her own words, Kristen shares her CCM3 syndrome journey and what she's learned about the rare disease community.
Patients
Together, We Are a Force
In her own words, Kristen shares her CCM3 syndrome journey and what she's learned about the rare disease community.
Patients
Stephen Started a Facebook Group to Bring Positivity to the Myasthenia Gravis Community
Stephen first began experiencing symptoms of myasthenia gravis when he noticed his vision was blurred while driving home from work.
Patients
Stephen Started a Facebook Group to Bring Positivity to the Myasthenia Gravis Community
Stephen first began experiencing symptoms of myasthenia gravis when he noticed his vision was blurred while driving home from work.
Patients
‘The Road Ahead Is Going to Be Difficult, But You Are Equipped for It’
Lindsey’s journey with her rare condition has evolved, and so has her ability to fiercely advocate for her needs as a patient and person.
Patients
‘The Road Ahead Is Going to Be Difficult, But You Are Equipped for It’
Lindsey’s journey with her rare condition has evolved, and so has her ability to fiercely advocate for her needs as a patient and person.
Patients
When Children Become the Caregivers
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.
Patients
When Children Become the Caregivers
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.
Patients
‘I Have More Hope Now Than I Ever Did Before’
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.
Patients
‘I Have More Hope Now Than I Ever Did Before’
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.
Patients
‘Make Sure You Find a Support System’
Sherman, who has CIDP, shares his advice for others in the rare disease community.
Patients
‘Make Sure You Find a Support System’
Sherman, who has CIDP, shares his advice for others in the rare disease community.
Patients
Lindsay Helps Teens With Physical Differences Embrace Who They Are
She hopes that her example will show others that it is possible to live a happy life with CLOVES syndrome.
Patients
Lindsay Helps Teens With Physical Differences Embrace Who They Are
She hopes that her example will show others that it is possible to live a happy life with CLOVES syndrome.
Patients
‘I Would Gladly Trade My Disability Plate for a Cure’
John was diagnosed with late-onset Tay-Sachs, and now he's raising awareness about the condition while continuing to pursue his passions.
Patients
‘I Would Gladly Trade My Disability Plate for a Cure’
John was diagnosed with late-onset Tay-Sachs, and now he's raising awareness about the condition while continuing to pursue his passions.
Patients
Whole Exome Sequencing Gave This Family a Diagnosis That Changed Their Whole Perspective
When McKenzie’s daughter, Mia, was diagnosed with Leigh syndrome, McKenzie blamed herself for it. “Because it’s inherited,” she explains, “you get that feeling that you contributed in some way.”
Patients
Whole Exome Sequencing Gave This Family a Diagnosis That Changed Their Whole Perspective
When McKenzie’s daughter, Mia, was diagnosed with Leigh syndrome, McKenzie blamed herself for it. “Because it’s inherited,” she explains, “you get that feeling that you contributed in some way.”
Patients
After 40 Years of Questions, These Siblings Finally Got an Answer
Theresa’s children, both in their 40s, were recently diagnosed with alpha-mannosidosis after almost a lifetime of experiencing symptoms.
Patients
After 40 Years of Questions, These Siblings Finally Got an Answer
Theresa’s children, both in their 40s, were recently diagnosed with alpha-mannosidosis after almost a lifetime of experiencing symptoms.
Patients
How Kim’s Parental Intuition Helped Her Son James Get Diagnosed
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: Wilson disease.
Patients
How Kim’s Parental Intuition Helped Her Son James Get Diagnosed
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: Wilson disease.
Patients
Tim’s Rare Disease Journal Is Helping Thousands of People Find Hope
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 could've imagined what happened next.
Patients
Tim’s Rare Disease Journal Is Helping Thousands of People Find Hope
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 could've imagined what happened next.
Patients
Andrea Wants People With Rare Disease to Be Treated Like Everyone Else
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.
Patients
Andrea Wants People With Rare Disease to Be Treated Like Everyone Else
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.
Patients
10 Things to Know About Wilson Disease
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.
Patients
10 Things to Know About Wilson Disease
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.
Patients
What Happened When Kasey Joined Forces With Other Parents
Ever since her son, Will, was diagnosed with SURF1-associated Leigh syndrome, Kasey has gone to great lengths to drive forward research not only for his disease, but for other rare diseases as well.
Patients
What Happened When Kasey Joined Forces With Other Parents
Ever since her son, Will, was diagnosed with SURF1-associated Leigh syndrome, Kasey has gone to great lengths to drive forward research not only for his disease, but for other rare diseases as well.
Patients
‘Just Keep Grinding’: How Jareb Deals With Wilson Disease
Jareb began experiencing symptoms of Wilson disease when he was a preteen. Today, he uses diet and medication to manage his condition, and has made creative adaptation in his work life.
Patients
‘Just Keep Grinding’: How Jareb Deals With Wilson Disease
Jareb began experiencing symptoms of Wilson disease when he was a preteen. Today, he uses diet and medication to manage his condition, and has made creative adaptation in his work life.
Patients
To Honor Her Sons’ Legacies, This Mom Dedicated Her Life to Helping Others
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.
Patients
To Honor Her Sons’ Legacies, This Mom Dedicated Her Life to Helping Others
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.
Patients
How Having a Rare Disease Took a Toll on Leah’s Friendships
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.
Patients
How Having a Rare Disease Took a Toll on Leah’s Friendships
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.
Patients
Ensuring High-Quality Data for Rare Disease Research
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.
Patients
Ensuring High-Quality Data for Rare Disease Research
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.
Patients
After Her Daughter Jessica Was Diagnosed With NF2, Lisa Knew Knowledge Would Be Power
"As soon as I had the genetic results, I wanted to get it out to anyone who was willing to listen."
Patients
After Her Daughter Jessica Was Diagnosed With NF2, Lisa Knew Knowledge Would Be Power
"As soon as I had the genetic results, I wanted to get it out to anyone who was willing to listen."
Patients
A PSP Wish List: Common Items People Impacted by PSP Might Need
Gradually, PSP patients can have trouble completing everyday activities. Here’s a compiled list of items that PSP community members have shared.
Patients
A PSP Wish List: Common Items People Impacted by PSP Might Need
Gradually, PSP patients can have trouble completing everyday activities. Here’s a compiled list of items that PSP community members have shared.
Patients
How PicnicHealth is supporting more inclusive research on MS
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.
Patients
How PicnicHealth is supporting more inclusive research on MS
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.
Patients
How PicnicHealth is pioneering research in lupus with real-world data
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.
Patients
How PicnicHealth is pioneering research in lupus with real-world data
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.
Patients
How you can see all your medical records and support IBD research at the same time
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.
Patients
How you can see all your medical records and support IBD research at the same time
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.
Patients
This Mom Is Fighting for Answers After Losing Two of Her Children to a Rare Disease
Deborah is determined to help other families impacted by GM1 gangliosidosis to honor her sons, Luke and Isaiah.
Patients
This Mom Is Fighting for Answers After Losing Two of Her Children to a Rare Disease
Deborah is determined to help other families impacted by GM1 gangliosidosis to honor her sons, Luke and Isaiah.
Patients
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