Resources & Articles

Life isn’t always fair. You have just turned 15 ½ and you’ve lost feeling in your lower legs. You have spinal cord compression. Lower back surgery is absolutely necessary. I know you think that this is the end of the world, but some miracles can happen. You will experience even harder things in life.

I strongly believe that age is just a number.There was a point in my cancer journey when I bargained with God. I asked him why he allowed me to get diagnosed in my twenties and wished he could have changed the timing to at least my forties or fifties.

What’s the most favorite thing about yourself? My answer used to be my thick hair. It was organically long, healthy, and shiny. I used to follow the Asian stereotype where nothing about my body was #thiccccc, except my hair.

Why You're Never 'Done' Even After Breast Cancer Treatment

Get to know Sara Snell Taylor, Senior Epidemiologist at PicnicHealth and discover how she leverages real-world data to improve patient outcomes

PicnicHealth is thrilled to announce our entry into the real-world data market for oncology. Leveraging our successes in chronic and rare diseases, we're now dedicated to advancing oncology research by collaborating directly with people living with cancer.

Welcome to PicnicHealth’s Team Spotlight series, where we introduce you to the talented people that are working behind the scenes at PicnicHealth. Today you’ll get to know Justin Maslin, the Engineering Manager for the Care Experience team at PicnicHealth

Clinical trials and PicnicHealth are two approaches when it comes to advancing medical knowledge and improving patient outcomes. While both clinical trials and PicnicHealth have their strengths and limitations, it's important to understand the differences between the two when considering options for improving healthcare.

Patients typically access their medical records through patient portals, which are online platforms that allow you to view their health information and communicate with your healthcare providers. Many patient portals are part of an electronic health record (EHR) system used by healthcare providers. While EHR systems are helpful tools for managing records from one facility, requesting prescription refills, or paying bills, they often fall short when consolidating information from different healthcare organizations or participating in research.

Managing an IgA nephropathy (IgAN) diagnosis, whether it's yours or that of a loved one, can feel incredibly overwhelming, isolating, and just plain difficult. These five content creators living with IgAN are giving hope to the community by sharing their real experiences, tips, and resources to remind you you’re not alone.

Although there is a large and diversified group of Asian Americans and Pacific Islanders (AAPI) in the United States, clinical trials and medical research frequently underrepresent this group. This underrepresentation result in a lack of knowledge about how particular medications and therapies affect AAPI people, potentially resulting in less effective or even hazardous medical interventions.

PicnicHealth is excited to announce that we are expanding our long-term partnership with Roche and Genentech to better understand brain health and accelerate neurological disease research using real-world data.

Sarah You is an IgAN Change Champion who has used her challenges with IgA nephropathy to help others. Sarah was diagnosed with IgAN when she was 21 years old, living as an international student in the US. She flew back to receive treatment and be with her family in Korea following her diagnosis. Now that she understands how to manage her IgAN, she has a master's degree in immunology and is currently applying to medical schools so she can be a support system for other rare disease patients.

IgA nephropathy (IgAN) is a type of kidney disease that affects the glomeruli, the tiny filtering units within the kidneys. To diagnose and monitor IgAN, patients typically undergo a range of tests, including blood labs for kidney diseases, urine tests for kidney disease, and imaging studies.

CureDuchenne and PicnicHealth Announce Real-World Evidence-Focused Partnership to Incorporate Participant Medical Records into CureDuchenne Link

In the US, nearly two million kidney biopsies are performed each year at a rate of 175 procedures per million population. Kidney biopsies can reveal important information about kidney function and inform nephrologists about the possible cause of symptoms that brought the patient in for a visit in the first place.

Managing a chronic condition can be challenging, but there are tools to help patients monitor their health and manage their symptoms. From wearable health monitors to online medical record platforms, blood pressure monitors, symptom-tracking apps, and diet-tracking tools, patients have a variety of resources at their disposal. Here are six tools that can help you take control of your health and manage your IgA Nephropathy:

There are many organizations dedicated to helping patients with IgA nephropathy. Here are five of the top organizations that IgA nephropathy patients can turn to for support and resources.

If you’ve been diagnosed with IgAN or suspect that you may have the disease, finding a knowledgeable and experienced nephrologist or IgAN specialist is crucial to managing your symptoms and receiving appropriate treatment. But where do you start?

IgA nephropathy (IgAN) is a kidney disease that can cause inflammation and damage to the kidneys due to the deposition of the immunoglobulin A (IgA) protein in the tiny filters in the kidneys, called ‘glomeruli’, which can lead to kidney dysfunction. The diagnostic process for IgAN usually involves a combination of tests to evaluate kidney function and determine the extent of damage.

A kidney transplant is a surgical procedure where a healthy kidney is placed into a patient whose kidneys no longer function properly. The healthy kidney comes from either a living or deceased donor. End-stage renal disease occurs when a patient’s kidneys lose the ability to filter fluid and waste from the body, leaving harmful levels of waste behind.

IgA Nephropathy (IgAN), also known as Berger’s disease, is a rare kidney disease that can cause issues with the kidneys’ ability to filter waste from the bloodstream. IgAN occurs when a compound called immunoglobulin A (IgA) builds up in excess within the kidneys, resulting in inflamed tissue and other complications. Thanks to modern treatment methods, IgAN can be effectively managed and its prognosis significantly improved. However, if left untreated, IgAN can lead to serious health problems, underscoring the importance of timely diagnosis and treatment.

The COVID-19 pandemic has had a significant impact on the lives of millions of people worldwide, including those with chronic conditions such as IgAN. Although there is limited research on the effects of COVID-19 on people with IgAN, it is crucial to take precautions and seek medical attention if you experience symptoms.

IgA nephropathy, also known as IgAN or Berger’s disease is a type of kidney disease that occurs when there is an excess build-up of immunoglobulin-A (IgA) within the kidneys. If left untreated, this can cause inflammation of the kidneys and other complications that reduce the kidneys’ ability to efficiently filter waste products from the bloodstream.

IgAN, or IgA nephropathy, is a chronic kidney disease affecting millions worldwide. Despite its prevalence, many patients struggle to understand the symptoms of IgAN and how to manage the condition effectively. ‍This is a problem that the team at PicnicHealth is working hard to solve. Founded by Noga Leviner in 2014, PicnicHealth was created by a fellow patient to empower others to take complete ownership of their health records and manage their conditions confidently. In this guide, we will explore the symptoms of IgAN, also known as Berger’s Disease, and provide helpful tips for managing the condition.

Sometimes, my experience with IBM leaves me feeling amazed at how hard it is to figure everything out.

It’s important us PA parents keep using our voices to push for more research.

Our world had turned upside down, our ground had shifted below us, and we were trying to grasp at anything to hold on to.

At the heart of genetic counseling is empowering patients and families with knowledge of genetic disease and being a supportive pillar as they navigate their journeys.

2022 was the biggest and most exciting year yet for PicnicHealth - not only for our team, but for our Change Champions, PicnicHealth users, and research partners. We want to thank everyone for being a part of this incredible community and making this past year possible. Before we jump into 2023, join us as we look back at our favorite moments of last year. We raised $60 million in Series C funding! PicnicHealth is ecstatic to have raised a $60m Series C to help build deep, complete, and clinically-rich real-world datasets in several new diseases. The team spent the year growing our research program portfolio, connecting with new patient populations to initiate new studies; introducing new capabilities to our patient app to make it easier for patients to tell us more about their experiences by completing surveys, diaries, and more; and building new data features to help researchers gain new insights faster.

As a bleeding disorder, Hemophilia has the potential to create some serious problems for the patients that live with it every single day. Without the ability to properly clot your blood, it can be difficult to take many risks that could lead to excessive bleeding. Plus, this bleeding can occur internally at just about any time. This can significantly lower the patient’s overall quality of life, but there is a chance that it doesn’t have to be that way.

I'm beginning to understand a lot of the things that are going on with my body and things that I can do to have at least a little bit of agency.

Caring for a loved one diagnosed with Alzheimer's can be overwhelming. However, in-home care can provide patients with a safe and comfortable environment and allow them to retain some degree of independence.

Managing an Alzheimer's diagnosis, whether it's yours or that of a loved one, can feel incredibly overwhelming, isolating, and just plain difficult. These five content creators share their real experiences, tips, and resources with Alzheimer's.

Alzheimer’s disease is the world’s most common form of dementia, affecting more than five million Americans over the age of 65, and approximately 200,000 Americans under 65 who are diagnosed with early-onset Alzheimer’s disease. It is characterized by problems with memory, thinking, and behavior. If you or someone you care for has been diagnosed with Alzheimer’s, it’s important to learn about the disease and it’s different stages so that you can get the right treatment and support.

Alzheimer's is the most common form of Dementia and is characterized by how it impacts a human's behavior, thinking, and most importantly, memory. The symptoms can worsen over time, and the patient may have difficulty carrying out daily activities. Memory lapses, or mild memory loss, are usually one of the first signs of Alzheimer's disease and symptoms continue to worsen over time, although the rate at which the disease progresses can vary.

A diagnosis of Alzheimer’s disease or dementia for your loved one can be overwhelming. There’s a lot to think about, from medical care to emotional support, from daily logistics to planning for the future. Staying organized with paperwork may seem minor, but for caregivers, it can make everything you’re dealing with a lot more manageable.

Every milestone is so much bigger to us because he does things we thought alpha-mannosidosis might not ever allow him to do.

At the 38th Congress of the European Committee for Treatment and Research in Multiple Sclerosis PicnicHealth data was featured in two posters presented by our research partners. Continue reading below for more information on how your contribution is supporting leading Multiple Sclerosis researchers.

PicnicHealth Gives Back has returned for another year! Every time a patient contributes to a PicnicHealth research study, PicnicHealth will donate to a patient advocacy group until December 31, 2022.

November 24th, 2022 is National Family Health History Day (also known as National Family History Day) — a day to raise awareness of familial health.

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.

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.

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.