Community Spotlight: Bleeding Disorders That Aren't Hemophilia...Inherited hemophilia is not the only type of bleeding disorder. Other bleeding disorders can appear similar to hemophilia but involve different abnormalities...reactions4comments
Finding a Therapist...I’m a fan of therapy, but to be honest, I personally haven’t always found it to be helpful in the past. Perhaps...reactionscomments
Voting with a Rare Disease...Voting is a fundamental American right, but it has special meaning for people with disabilities or health conditions. Until federal laws like...reactionscomments
Clinical Trial Participation...Clinical trials are medical studies that pose a question: Does a new treatment work better than older treatments? Each year, thousands of...reactionscomments
Clinical Trial Glossary...Clinical trials or studies have a language of their own. It helps to understand the common terms doctors use when talking about...reactionscomments
Understanding Clinical Trials...A clinical trial is a type of research. Research is the process scientists use to explain how our bodies work or why...reactionscomments
ICD Codes: Why They Matter in Rare Disease...The International Statistical Classification of Diseases and Related Health Problems (ICD) is used worldwide to standardize the classification of diseases. It is...reactionscomments
What Is Gene Therapy?...Genes are the pieces of DNA that make us who we are. They determine our eye and hair color, how tall we...reactionscomments
Community Spotlight: Glycogen Storage Diseases...Glucose is an important sugar that bodies need for energy. The body packs small molecules of glucose into large molecules called glycogen...reactionscomments
Jenny Jones...Jenny is a Rare Disease Advocate for Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome (SBS). She was diagnosed with FAP in...
Jessica Hanson...Jessica Hanson is a NYC-based actor, singer, yoga teacher, fitness instructor, social media manager, writer, blogger, autoimmune disease advocate, and cat lover...
Tatiana Corbitt...Tatiana Corbitt is a person living with Narcolepsy Type 1. She graduated with her Master's degree in Applied Biological Sciences and is...
Starting (and Sticking to) an Exercise Routine...Improving your physical fitness has a host of benefits, regardless of whether you have a rare disease or not. Walking, swimming, biking...
Ella Balasa...Ella Balasa is a patient advocate, consultant, and a person living with cystic fibrosis. She was diagnosed at 18 months old and...
Parenting While Managing a Rare Disease...Parenting can be incredibly rewarding. However, parenting is hard. Both parents and children are human, and there is no guidebook to raising...
Contact Us...Have a question? We’re here to help. Please email us at contact@raredisease.net. Please note that our team hours are Monday-Friday 8:30AM -...
Welcome to RareDisease.net Stories!...At RareDisease.net, we believe that we are stronger together than we are alone. Living with or caring for someone with a rare...reactionscomments
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