Signs and Symptoms of Rare Kidney DiseasesRare kidney diseases can affect people of all ages and backgrounds. There are more than 150 different types of these diseases, and...reactionscomments
How Persistence and Medical Partnership Impact DiagnosisI 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 BurnoutWith a rare disease, it seems it doesn't take much for us to enter the world of becoming a complex rare disease...reactionscomments
A Caregiver's Guide to Explaining a Rare Disease DiagnosisAs 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 DoctorI 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 MomentReacting 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 DiseaseIt'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 ConsiderSocial 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 DiseaseAs 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 DiseaseNavigating 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 BurnoutAdvocacy 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 DiseaseLearning how to advocate for yourself can be challenging. Sticking up for yourself in social situations is a journey. Here are a...reactions4comments
My Multidisciplinary Care Team: Why I Love My Hemophilia Treatment CenterI used to hate any type of doctor's appointment. Having been born with hemophilia, many of my earliest trips to the hospital...reactionscomments
The Lingering Threat of Self-StigmaLiving with a rare medical condition is a multi-faceted endeavor. First, you have the medical reality, where your own acceptance is imperative...reactionscomments
Getting Beyond the BS (Beyond Severe)Disclosing a medical condition is tricky territory because we always have to be prepared for the worst possible reaction. Sadly, the scale...reactionscomments
My Rare Disease Journey With HemophiliaGreetings! My name is Shawn, and I'm happy to be a contributing writer for RareDisease.net. Maybe you are also living with a...reactionscomments
From Reactive to Proactive: Self-Administered TreatmentThere's been a big change this year in how I approach my rare disease, hemophilia A. I'm treating myself at home once...reactions5comments
Am I Too Chill About My Rare Disease?Recently, I had lunch with my fellow RDs (Rare Diseasers). These are some of my friends who also live with hemophilia. Since...reactionscomments
Living for the Good ThingsLiving with a rare disease comes along with a lot of difficulties. It can be scary at times, too, not having control...reactionscomments
How to Manage Fluctuating Symptoms With Rare DiseaseHave you noticed that your symptoms fluctuate or change, sometimes unexpectedly, as a person with a rare disease? I have type 1...reactions3comments
