Community Health Leaders...In order to stay up to date on the latest treatments, drug discovery, clinical studies, and how to cope with rare disease every...
Signs and Symptoms of hATTR-PN...Living with unexplained health changes can feel like trying to solve a puzzle with missing pieces. Many people with hereditary transthyretin amyloidosis...reactionscomments
How Is Amyloidosis Treated?...Amyloidosis is a rare disease in which an abnormal protein called amyloid builds up in the organs. The heart, kidneys, liver, spleen...
Signs and Symptoms of Rare Kidney Diseases...Rare kidney diseases can affect people of all ages and backgrounds. There are more than 150 different types of these diseases, and...reactionscomments
Finding Peace in the Unknown: My Journey Through Pain, Purpose, and Empowerment...I believe in the transformative power of love, grace, and peace. My journey of self-discovery has shown me that in helping others...reactions10comments
One In Fifteen: My Story...I was born at 24 weeks - weighing under a pound and was only 8 inches long. My parents were told I...reactions1comment
My Son Has Familial Adenomatous Polyposis (FAP) Syndrome...My ex was not happy with our son’s height,. He felt our son wasn’t growing.I reminded him that our older son, Michael...reactions3comments
A Lifetime of Being Disbelieved...10 years ago I was diagnosed with progressive systemic sclerosis, SSc.For many years I've suffered with severe gastrointestinal issues, and for years...reactions4comments
How Persistence and Medical Partnership Impact Diagnosis...I am a complicated rare disease patient. Not only do I have two rare diseases, but I am also potentially developing a...reactions4comments
Tips for Reducing Medical Appointment Burnout...With a rare disease, it seems it doesn't take much for us to enter the world of becoming a complex rare disease...reactionscomments
What to Expect From Genetic Counseling and Testing...If you have a rare disease or one runs in your family, your doctor might suggest genetic counseling and testing. People get...
A Caregiver's Guide to Explaining a Rare Disease Diagnosis...As our family's rare disease community (VAMP2) continues to grow, I am often frustrated with the healthcare providers who are giving this...reactionscomments
Patient Advocacy: Tips for Communicating with Your Doctor...I once told someone about their healthcare, "You have to be the squeaky wheel." Later, a provider warned that being a "squeaky...reactionscomments
Managing Overwhelm: Giving Ourselves Permission to Take a Moment...Reacting versus responding. There's a difference between them that can be ignored or forgotten. Reacting is that gut punch reflex that tells...reactions2comments
Misconceptions About My Rare Disease...It's hard to know exactly what someone else is going through, especially if the other person has a rare disease that most...reactions2comments
Inclusivity and Rare Diseases: 6 Things for Friends and Family to Consider...Social situations can be very difficult to navigate with a rare disease or chronic illness. From navigating logistics to friends just not...reactions1comment
5 Tips for Practicing Self-Care With a Rare Disease...As a person continuously navigating life with multiple chronic illnesses, self-care is an interesting concept for me. How I wish that a...reactionscomments
Tips for Navigating Gatherings With a Rare Disease...Navigating gatherings with loved ones can be tricky enough on its own. Throw in a rare disease – and maybe a few...reactionscomments
6 Ways to Navigate Advocacy Burnout...Advocacy burnout is real. Some days, I'm just so tired of talking about my autoimmune conditions, navigating popular platforms, and battling uneducated...reactionscomments
How to Advocate for Yourself in Social Situations With a Rare Disease...Learning how to advocate for yourself can be challenging. Sticking up for yourself in social situations is a journey. Here are a...reactions4comments
