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April 6, 2024

Maddox's Journey: Love, Challenges, and Advocacy in the World of CAH

Walking through life with salt-wasting congenital adrenal hyperplasia (CAH) brings its own set of ups and downs. For Taylor and her son, Maddox, it’s a path marked by sudden storms and sunny days, a mix of medical emergencies and moments of pure childhood joy. Here’s their story, told with the warmth and honesty that Taylor brings to every conversation.

By 
Taylor Nolen. as told to PicnicHealth
2
 Minute Read
Disease Management
Disease Management
February 13, 2024

Empowering Wellness: Spotlight on Three Organizations Championing Black Mental and Physical Health

As we celebrate Black History Month, we recognize that Black history and the wellness of Black communities must be top of mind every day of the year. Despite the many contributions Black people have made to medicine and wellness, alarming health disparities due to structural and interpersonal racism, still exist for Black people.

By 
PicnicHealth
3
 Minute Read
Patient Stories
Community Stories
February 1, 2024

Making a Difference: A Closer Look at Rare Patient Voice's Role in Research

In celebration of Rare Disease Month, we are thrilled to shine a spotlight on Change Champions, dedicated partners, and organizations making a lasting impact on rare disease research throughout the year. At the forefront of this movement is Rare Patient Voice, a remarkable resource founded with a singular mission – to provide patients and family caregivers a platform to be heard by actively participating in diverse research endeavors, including rare diseases.

By 
PicnicHealth
4
 Minute Read
Patient Stories
Community Stories
February 1, 2024

Amplify Your Voice: Join the #ShareYourRare Campaign!

In honor of Rare Disease Awareness Month, we're thrilled to kick off our #ShareYourRare campaign. We believe that your stories matter, and through #ShareYourRare, we want to highlight the often-overlooked challenges and stories of those who are living with a rare condition.

By 
PicnicHealth
1
 Minute Read
Patient Stories
Community Stories
January 5, 2024

How to Advocate for Your Child with Achondroplasia in a Medical Setting

Navigating the complex medical landscape is an imposing journey, and it becomes even more challenging when your child is diagnosed with a rare condition like Achondroplasia.

By 
Victoria G. as told to PicnicHealth
4
 Minute Read
Patient Stories
Community Stories
January 3, 2024

Embracing Life's Uniqueness: Lydia and Charlie’s Journey with Achondroplasia

In the heart of Urbana, Ohio, Lydia and her husband Charlie embarked on an unexpected journey that began with the arrival of their daughter, Dagny. Diagnosed with achondroplasia, their story is one of discovery, resilience, and unwavering love.

By 
Lydia H. as told to PicnicHealth
3
 Minute Read
Patient Stories
Community Stories
January 1, 2024

Navigating Life with Achondroplasia: Brynn's Story

In a world where each child's journey is unique, Brynn’s story stands out for its strength and resilience. Diagnosed with achondroplasia, Brynn, and her family, have navigated a path filled with challenges, discoveries, and immense love.

By 
Kenzie S. as told to PicnicHealth
4
 Minute Read
Patient Stories
Community Stories
December 28, 2023

Journey of Understanding: A Family's Experience with Achondroplasia

The journey of Janet's family into the world of achondroplasia began unexpectedly when their baby girl was diagnosed at four months old.

By 
Janet B. as told to PicnicHealth
2
 Minute Read
Company Updates
Company Updates
December 22, 2023

‘Tis the season — join PicnicHealth in giving back to The American Kidney Fund and The Chandler Project

We’re thrilled to share that #PicnicHealthGivesBack, our annual giving campaign, has returned this year. From now until January 5, 2024, we’re donating to The American Kidney Fund (AKF) and The Chandler Project for each new PicnicHealth sign-up, up to $6k. Join PicnicHealth today to make an even bigger impact.

By 
The PicnicHealth Team
2
 Minute Read
Patient Stories
Community Stories
December 1, 2023

Life with IgA Nephropathy: What to expect after diagnosis

Life with IgA Nephropathy: What to expect after diagnosis

By 
the PicnicHealth Team
2
 Minute Read
Patient Stories
Community Stories
November 29, 2023

Webinar: How to Advocate for Your Child with Achondroplasia in a Medical Setting

We partnered with The Chandler Project for an empowering achondroplasia community webinar on how to advocate for your child in a medical setting!

By 
the PicnicHealth Team
37
 Minute Read
Disease Management
Disease Management
November 28, 2023

CAHtalog: The Power of Medical Records in Research

CAHtalog: The Power of Medical Records in Research is a brief presentation that highlights the CAHtalog registry – an effort sponsored by Neurocrine and supported by CARES and PicnicHealth.

By 
The PicnicHealth Team
13
 Minute Read
Patient Stories
Community Stories
November 22, 2023

Navigating the Holidays with a Chronic Illness

The first of November has sort of always been the mental marker for me to “up my game” for the Holiday Season. Pumpkin lattes and all things Gourd related are being shoved down our throats. I used to like Pumpkin Spice but now I think it’s safe to say the Pumpkin Craze has gone a bit overboard. Nevertheless I still have love for those that get suckered into the few months of insane commercialism and Seasonal Trends.

By 
Brittany Quiroz
5
 Minute Read
Patient Stories
Community Stories
November 2, 2023

Beyond the Diagnosis

In October 2022, at the young age of 30, Rachel found herself facing a life-altering diagnosis. While most people her age were enjoying reaching the toddler phase of parenting, she was plunged into a world of uncertainty, fear, and guilt. Her husband, a dedicated United States Navy member, was about to embark on an extended sea duty, leaving her to navigate the turbulence of a cancer diagnosis with two young children by her side.

By 
Rachel Shvetz
4
 Minute Read
Company Updates
Company Updates
October 23, 2023

PicnicHealth Acquires AllStripes, Fortifying its Role as the Leader in Patient-Centered Healthcare Evidence Generation

PicnicHealth announced the acquisition of AllStripes, a platform dedicated to generating evidence about the rare disease community. This strategic consolidation establishes PicnicHealth as the leading patient-centric evidence generation partner within a rapidly evolving life sciences landscape. 

By 
the PicnicHealth Team
2
 Minute Read
Patient Stories
Community Stories
October 16, 2023

A Letter to My Younger Self With Dwarfism

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.

By 
Becky Kekula
4
 Minute Read
Disease Management
Disease Management
October 16, 2023

How breast cancer research studies can help your family with early detection

Early detection of breast cancer can make all the difference in terms of treatment options and outcomes. In addition to regular self-exams and OBGYN appointments, having a complete picture of your family history is one of the best tools you have at your disposal.

By 
the PicnicHealth Team
4
 Minute Read
Patient Stories
Community Stories
October 13, 2023

When You're the Youngest Breast Cancer Patient Your Doctor's Ever Seen

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.

By 
Michelle Kang
4
 Minute Read
Patient Stories
Community Stories
October 10, 2023

It’s OK If You Don’t ‘Grow Bolder As You Grow Balder’ with Breast Cancer

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.

By 
Michelle Kang
4
 Minute Read
Disease Management
Disease Management
October 4, 2023

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

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

By 
Grace Lombardo
3
 Minute Read
Medical Research
Medical Research
May 31, 2023

How is participating in a PicnicHealth study different from a traditional clinical trial?

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. 

By 
the PicnicHealth Team
3
 Minute Read
Medical Research
Medical Research
May 31, 2023

How is PicnicHealth different from my patient portal?

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. 

By 
the PicnicHealth Team
3
 Minute Read
Disease Management
Disease Management
May 24, 2023

5 Must-Follow Kidney Disease Content Creators for IgAN Patients

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.

By 
the PicnicHealth Team
4
 Minute Read
Patient Stories
Community Stories
May 18, 2023

AAPI Heritage Month: Asian Representation and Inclusion in Research

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. 

By 
Sarah You
2
 Minute Read
Patient Stories
Community Stories
April 19, 2023

My Journey with IgAN: Overcoming Challenges and Finding Support

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.

By 
Sarah You
5
 Minute Read
Disease Management
Disease Management
April 12, 2023

Your IgAN Lab Values: A Comprehensive Guide

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.

By 
the PicnicHealth Team
5
 Minute Read
Disease Management
Disease Management
April 7, 2023

Kidney Biopsy for IgAN: Understanding the Procedure and Its Importance

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.

By 
the PicnicHealth Team
5
 Minute Read
Disease Management
Disease Management
April 4, 2023

Top Tools to Help Manage Your IgA Nephropathy Care

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:

By 
the PicnicHealth Team
3
 Minute Read
Disease Management
Disease Management
April 2, 2023

5 Advocacy Organizations for IgAN Warriors

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.

By 
the PicnicHealth Team
3
 Minute Read
Disease Management
Disease Management
March 31, 2023

How to Find the Best Nephrologist for You

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?

By 
the PicnicHealth Team
4
 Minute Read
Disease Management
Disease Management
March 28, 2023

How COVID-19 Impacts Individuals with IgA Nephropathy: Insights and Precautions

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.

By 
the PicnicHealth Team
3
 Minute Read
Disease Management
Disease Management
March 28, 2023

IgAN Treatment Options: Managing Symptoms and Supporting Kidney Health

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.

By 
the PicnicHealth Team
4
 Minute Read
Disease Management
Disease Management
March 22, 2023

Lifestyle Changes to Support Kidney Health

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.

By 
the PicnicHealth Team
4
 Minute Read
Disease Management
Disease Management
March 21, 2023

Understanding IgA Nephropathy Recognizing Symptoms and Signs

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.

By 
the PicnicHealth Team
5
 Minute Read
Patient Stories
Community Stories
February 9, 2023

I Learned Everything I Know About Wheelchairs on YouTube

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

By 
Richard Mower, José Vadi
4
 Minute Read
Patient Stories
Community Stories
February 8, 2023

I Advocate Not Only For Melissa, But For All People With PA

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

By 
Kathy Stagni, PicnicHealth
6
 Minute Read
Life at PicnicHealth
Life at PicnicHealth
February 1, 2023

From Italy to Holland, One Step at a Time

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

By 
Aditya Shah, Chief of Staff
6
 Minute Read
Disease Management
Disease Management
January 24, 2023

Webinar Recording: Organizing Your PNH Medical Records in 2023

We sat down with Brandi and Erin to discuss managing their medical records in 2023

By 
The PicnicHealth Team
55
 Minute Read
Disease Management
Disease Management
January 12, 2023

All About Genetic Counseling

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.

By 
Bissaya Abdella
3
 Minute Read
Medical Research
Medical Research
December 21, 2022

How Novel Therapies are Impacting Hemophilia A and B

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.

By 
PicnicHealth Team
2
 Minute Read
Patient Stories
Community Stories
December 19, 2022

‘I Was Raised Reading Food Labels’

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.

By 
Anna, José Vadi
4
 Minute Read
Disease Management
Disease Management
December 14, 2022

4 documents you need when caring for a loved one

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.

By 
The PicnicHealth Team
8
 Minute Read
Patient Stories
Community Stories
December 14, 2022

5 Alzheimer's Content Creators You Need to Follow

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.

By 
The PicnicHealth Team
5
 Minute Read
Disease Management
Disease Management
December 14, 2022

About Alzheimer's

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.

By 
PicnicHealth Team
7
 Minute Read
Disease Management
Disease Management
December 14, 2022

Receiving an Alzheimer's Diagnosis

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.

By 
The PicnicHealth Team
10
 Minute Read
Disease Management
Disease Management
December 14, 2022

How to find the best in-home care for your loved one

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.

By 
The PicnicHealth Team
7
 Minute Read
Patient Stories
Community Stories
December 8, 2022

Quinn Finds Joy in Everything

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

By 
Dana Faerdy, PicnicHealth
4
 Minute Read
Medical Research
Medical Research
December 5, 2022

2022 Multiple Sclerosis Research Update

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.

By 
The PicnicHealth Team
6
 Minute Read
Disease Management
Disease Management
November 23, 2022

This Holiday Season, Talk About Your Family Health History

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

By 
Leticia Silva
2
 Minute Read
Disease Management
Disease Management
November 14, 2022

Feeling More Me

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

By 
Chandler Crews
4
 Minute Read
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