We are excited to announce the launch of our new Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRD) Research Cohort, a patient-centric real-world data source that provides comprehensive data to enable your therapy’s evidence goals.

Webinar: PicnicHealth's patient-centered approach to real-world data collection

DIA RWE is focused on the broader scope and challenges of reframing clinical investigation using RWE. Here are a few of the key takeaways from a stimulating and engaging conference.

To me, having achondroplasia isn’t what makes me beautiful. It’s one part of my life.

PicnicHealth, a patient-centered health technology company, and Bristol Myers Squibb are working together to leverage real-world evidence to study symptomatic obstructive hypertrophic cardiomyopathy patients within the DISCOVER-HCM Registry.

I am just trying to be as honest as possible... Growing up having this disease has been pretty rough.

As life science continues to benefit from a growing number of real-world data sources, from EHRs and claims to PROs and devices, organizations must weigh two factors. One is whether an individual data source is structured to support their clinical and business needs. The other is why a patient-centric approach unlocks the true power of traditionally siloed data

Being born with a disability that has evolved or progressed in my lifetime, I’ve had to adapt to every moment.

MMA is such a small part of the picture of what her life looks like, and now we can really just bask in the joy of Callaway experiencing life.

Alzheimer's disease is a progressive, degenerative brain disorder that causes problems with memory, thinking, and behavior. The earliest symptoms of Alzheimer's usually begin to appear in people in their late 30s or early 40s, but because they are often mistaken for other health conditions, they may not be noticed. As the disease progresses, it becomes increasingly difficult to diagnose and treat accurately.

Maria Montessori is famous for revolutionizing child development and education, but people of all ages can benefit from the Montessori approach, especially when learning new things. Applying Montessori principles to Dementia Care doesn’t infantilize people living with Dementia. Similarly to children, it empowers them to be independent and creative. For people living with Dementia, each day is an opportunity to rebuild, discover, and learn, and it’s on us to support them. If we embrace this growth mindset, imagine the possibilities.

Five years into her mother, Linda’s, mixed dementia diagnosis, Patti LaFleur made the decision to have her mother move in with her and stepped into the full-time caregiver role. A former kindergarten teacher, Patti had no prior experience as a caregiver. What she did have, however, was love and gratitude for her mother and the confidence that they would figure things out together.Patti’s raw and honest account of caring for her mother has inspired the caregiving community on social media. In addition to care tips, she’s shared her mom’s infectious laughter, their beautiful partnership, and how they’ve overcome obstacles. We sat down with Patti to learn more about her caregiving journey and the insights she has gained.

Alzheimer's disease is a progressive, degenerative brain disorder that causes problems with memory, thinking, and behavior. The earliest symptoms of Alzheimer's usually begin to appear in people in their late 30s or early 40s, but because they are often mistaken for other health conditions, they may not be noticed. As the disease progresses, it becomes increasingly difficult to diagnose and treat accurately.

Mental health is becoming a greater part of the conversation among the rare disease community and its supporters.

Those first few hours were tough; we were asking questions nobody could answer because MMA is rare.

I believe that advocates are quintessential parts of the ecosystem for change because they inform lawmakers and health leaders of outdated policies and healthcare priorities.

Dr. Kimberly Chapman of Children’s National Medical Center sat down with AllStripes to discuss how she became an expert in MMA and PA and how de-identified data from medical records and the JUMP study will contribute to the MMA and PA research landscape.

Diversity and inclusivity in medical research are important, and yet, clinical trials tend to enroll a population skewed towards White. Real-world data can be part of the solution by removing barriers that limit representation across racial and ethnic groups.

You have to do what you can while you can because in the future it’s going to be more difficult.

The artist Bukky Adeyokunnu explains their photography’s relationship to living with sickle cell, in two videos set 9 years apart.

Our parents wanted us to feel "normal," but we didn't feel normal at all.

Read the results of our Distance to Care survey for patients with lysosomal storage disorders.

Since getting a diagnosis of Klippel-Trenaunay syndrome at 27, I’ve been able to better advocate for myself and others with my condition.

Little did I know that my inability to swallow was the beginning of a myasthenic crisis that would threaten my life, realign our world and keep me hospitalized for nearly seven weeks.

My interest is in remembering how afraid I was being in the hospital and not having a single person that I could talk to that understood what I was going through. That's why I've stayed connected.