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...reactionscomments
What Is MAC Lung Disease?...There are many types of lung disease. Some lung problems are caused by genetic issues like cystic fibrosis. Environmental exposures like cigarette...reactionscomments
Are You at Risk for MAC Lung Disease?...MAC lung disease is caused by Mycobacterium avium complex (MAC) germs. MAC germs are all around. They live in soil, water, household...reactionscomments
So You Have a Rare Disease… Now What?...Being diagnosed with a rare disease can be shocking, even scary! When I was diagnosed with Narcolepsy Type 1, I was relieved...reactions7comments
Asthma and Nontuberculous Mycobacterial (NTM) Lung Disease...An estimated 86,000 people in the United States live with nontuberculous mycobacterial (NTM) lung disease. And the number of people diagnosed with...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
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
When a Low Probability Feels Scary...I’m no stranger to autoimmune conditions. Let's take a look: I am among the roughly 1% of the population that has celiac...reactions1comment
Jenny Jones...Jenny is a Rare Disease Advocate for Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome (SBS). She was diagnosed with FAP in...
How Exercise Kept Me Out of the Hospital Until I Was 26...Editor’s Note: This article was written by Megan Barlow and originally appeared on our Cystic-Fibrosis.com community. I have always been active. Since...reactionscomments
Community Spotlight: Rare Cancers...Rare cancers affect fewer than 40,000 people per year in the United States. These cancers make up about a quarter of all...reactionscomments
Frank Rivera...Frank was previously a health leader on RareDisease.net. I am Frank Rivera, a rare disease patient advocate, an Illumina Ambassador, A RDLA...
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...
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
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...
Ella Balasa...Ella Balasa is a patient advocate, consultant, and a person living with cystic fibrosis. She was diagnosed at 18 months old and...
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...
Medical Review Board...The Health Union Medical Review Board is made up of board-certified healthcare professionals with extensive experience in their respective fields. They review...
Community Team...Welcome to Health Union's Community Team. Our Community Team is made up of a diverse group of employees of Health Union who...
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
