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.

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.

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.

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.

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.

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

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.

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

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.

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.

Living with a rare disease brings you to a doctor’s office more than the average person. To make the most of your time with your doctor, it is important to be prepared, listen, and speak up in order to build rapport with them. Here are my five tips to help you do this and improve your next doctor’s visit:Take notes. When talking to a doctor, it is easy to nod and agree with everything they are saying. It may all make sense at that moment, but the second you leave the office, so much information is forgotten. Taking notes on your phone or in a notebook helps ensure you have all the information to look back on if you forget what is discussed.Organize and keep track of your medical records. Having your records and imaging readily available, especially if you are seeing a new doctor, is extremely helpful not only for the doctor, but also yourself. Doctors will want to review your history, but you yourself may want to review your records to mark down how you physically feel and compare them to the actual testing. Programs like PicnicHealth’s Timeline make it easy to integrate your medical records between all your doctors (PNH-related or not), hospital visits, lab work, etc., and keep them readily available in one place.Keep a running list of questions between appointments. Whenever a question pops into your head, write it down! Bring that list to your appointment in whatever form is easiest for you; write them out, keep them stored on your phone, or even print them out so you can write the answers next to each question as you ask your doctor. Listen to your doctor, but remember you do not have to be a silent participant. Try to make sure appointments feel like a discussion rather than a one-sided lecture. Don’t forget, it’s your health, and no one knows your story better than you do.Stay informed. You are your best advocate, staying informed about PNH news is a great way to understand the disease and any opportunities you might have for new treatments. There are also low-effort ways to participate in PNH research with observational research studies. PicnicHealth is a great platform for both understanding your medical history and contributing to observational research.Don’t be intimated. Your doctor may have extensive education and multiple degrees, but don’t be nervous around them, they are humans too, and are there to help you. The more relaxed you are, the easier it is to open up and give them the information they need to give you the best care.

Collaboration is key, and that's what we need more of in research.

We are excited to launch a new Lupus Nephritis real-world data research cohort that arms researchers with powerful data to support clinical research programs and drive evidence generation now and into the future.

Hollywood hasn’t always made an effort to depict rare disease on screen, and when it has, the results have been mixed.

If contributing my medical records to research can help someone else with wAIHA someday, then that’s wonderful.