Questions to Ask Your Doctor About Pompe Disease...Whether it is you or a loved one who is diagnosed with Pompe disease, you likely have many questions about the condition...reactionscomments
Caring for Hudson: Q&A With a Parent Managing Hypotonic Cerebral Palsy...The best thing that has come out of being part of the rare disease community is the passionate, loving, and optimistic people...reactionscomments
How Nature Therapy Helps Me Live Better With a Rare Disease...Access to lush, green natural spaces feels like a privilege to me. As a person living with a rare disease, narcolepsy, it...reactionscomments
Being the Change: How My Advocacy Started...I remember the day the genetic counselor called me with my son's diagnosis. She gave me information about a paper published on...reactionscomments
What to Expect During a Disability Hearing (In America)...My phone buzzed angrily. It was 20 minutes after the hour, and I’d been scrambling about frantically. I was searching for documents...reactions3comments
Rare Disease and Food Insecurity ...Have you ever been so affected by your rare disease that you weren't able to go grocery shopping, leaving your pantry empty...reactionscomments
Inspirational, Courageous Me?!...Someone told me today that I was an inspiration. It's not the first time. In 2010, when I had the immense luck...reactionscomments
"What's Up, Doc?" What the Doctor-Patient Relationship Means to Me...Your relationship with your doctor can have a big impact on your health. Since your doctor is a key member of your...reactionscomments
Elle Cole...Elle Cole is a mom of twin daughters. After she and her husband learned their daughter had sickle cell disease, she wished...
Eating Healthy Without Breaking the Bank...It can be a challenge to eat healthy without spending a lot. And when you are living with a rare health condition...
Building a Rare Disease Treatment Plan Brick-by-Brick...It can take years to build an effective treatment plan to treat a rare disease like narcolepsy. I know this from my...reactionscomments
Some of My Most Absurd Rare Disease Mishaps...Although hilarity is not often associated with a rare disease, I'm glad I can laugh off a lot of the indignities that...reactionscomments
Landing the Right Advocacy Opportunity...Editor's Note: This article was written by Wunmi Bakare, a Health Leader living with sickle cell disease. Read more of Wunmi's articles...reactionscomments
How Is X-linked Hypophosphatemia Treated?...X-linked hypophosphatemia (XLH) is a life-long condition in which the body does not process the nutrient phosphorus properly. Because phosphorus is necessary...reactions1comment
Caring for a Child With X-linked Hypophosphatemia...X-linked hypophosphatemia (XLH) is a genetic disorder that affects how the body processes phosphorus (phosphate). Phosphorus is an essential mineral for healthy...reactionscomments
What Is X-linked Hypophosphatemia?...X-linked hypophosphatemia (XLH) is a rare disorder that causes low phosphorus levels. This happens because people with this condition pass the mineral...reactionscomments
Genetics 101...Our genes are like a recipe book for our bodies. They tell our cells what to do, how to grow, and how...reactionscomments
Finding a Job That Fits Your Health Needs...Work can be hard when you have a rare chronic disease. Companies generally do not offer as much flexibility as is needed...
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...reactionscomments
My Prurigo Nodularis Story...I was diagnosed with the above disease last year. It has a prevalence of around 3/10,000. The aetiology is unknown. It causes...reactions3comments
