My Rare Disease Journey With Hemophilia...Greetings! My name is Shawn, and I'm happy to be a contributing writer for RareDisease.net. Maybe you are also living with a rare medical condition. Or perhaps a loved one... By Shawn Decker4 min readBookmark for laterReactions0reactionsComments0 comments
What Is the Social Health Network?...Like our other Health Union condition communities, the Social Health Network brings people together to drive unique and impactful conversations about health. It also aims to expand opportunities for health... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
Nutrition for Lung Health...What you eat can play a big role in your lung health. Maintaining a healthy weight, partly through diet choices, can be especially important when you are managing lung issues... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
Shawn Decker...Shawn Decker is an internationally recognized health educator who has spoken to over 100,000 college students across the United States. After graduating from high school, he created one of the... By Editorial Team 1 min readBookmark for later
How to Navigate Online Doctor Ratings...Editor’s Note: This article was originally written by Elizabeth Medeiros and shared by our partner site Psoriatic-Arthritis.com. The internet has changed how we do everything these days, from dating to... By Editorial Team 2 min readBookmark for laterReactions0reactionsComments2 comments
Community Members Share Their MAC Lung Disease Experiences...Navigating a MAC lung disease diagnosis can be challenging. There can be a lot of uncertainty and many questions that arise. It helps to keep in touch with your doctor... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
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. Diagnosing a bleeding disorder requires blood tests. Blood... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
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 smoke can cause lung disease, too. And certain... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
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 dust, and some food products. Humans and animals... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
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 to know what the source of the problem... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments2 comments
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 NTM – especially among women and older adults... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
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. Glycogen is stored in the cells of the... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
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 the Americans with Disabilities Act (ADA) were enacted... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
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 disease, an autoimmune condition related to the consumption... By Jessica Hanson2 min readBookmark for laterReactions0reactionsComments1 comments
Jenny Jones...Jenny is a Rare Disease Advocate for Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome (SBS). She was diagnosed with FAP in 1994 at age 8, but not without hurdles... By Editorial Team 2 min readBookmark for later
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 I can remember, I’ve been involved in all... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
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 cancers and account for about a quarter of... By Editorial Team 2 min readBookmark for laterReactions0reactionsComments0 comments
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 Patient Advisory Council Member, a pharmaceutical advisory member... By Editorial Team 2 min readBookmark for later
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 currently working on her debut novel. The main... By Editorial Team 1 min readBookmark for later
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 I just hadn’t found the right therapist for... By Jessica Hanson3 min readBookmark for laterReactions0reactionsComments0 comments
