When a Rare Disease Diagnosis Brings Clarity (And New Concerns)...At age 65, I was diagnosed with cystic fibrosis (CF) by National Jewish Health (NJH) in Denver 6 months after I took...reactions2comments
No Family Is the Same: A Caregiving Parent Perspective on Divorce...As a young child, I was surrounded by the most amazing family. There were family gatherings, family vacations, and memories. And then...reactionscomments
Getting Back Into Advocacy After Burnout...Reaching complete physical, mental, and emotional exhaustion is a serious threat that can occur in a variety of life situations – not...reactionscomments
Parenting and Rare Disease: 5 Bonding Activities to Try With Your Child...If you are caring for a medically complex child, it can be difficult to find ways to bond, interact, and keep them...reactionscomments
Parenting and Rare Disease: A Journey Through Grief and Acceptance...The day my amazing little boy was born, I knew he was different. I was 22 years old and forced to grow...reactionscomments
Reflecting on the People We Would Never Meet Otherwise...It's a beautiful thing to meet someone who makes you forget your troubles. - author unknown I have always strived to see...reactionscomments
Personal Grooming With a Rare Disease...Living with a rare chronic disease isn't for the faint of heart. I live with type 1 narcolepsy, and the long list...reactionscomments
Caring for Someone With a Rare Disease...Caregiving for a loved one with a rare disease is both rewarding and challenging. Much time, energy, and resources can go into...
Participating in a Focus Group as a Rare Disease Patient...Recently, the Cystic Fibrosis (CF) Foundation invited me to participate in a focus group with other late-diagnosed CFers. It was a fascinating...reactionscomments
Rare Disease Statistics...There are between about 5,000 and 10,000 conditions that are called rare. The US Rare Diseases Act of 2002 defined a rare...
Rare Disease Research...Rare diseases present a special challenge to medical research. There are thousands of rare diseases. And more are being found each year...
Myths and Misconceptions About Rare Diseases...People with rare diseases sometimes have to deal with misconceptions other people have about what it is like to live with a...
Creating Business Cards for Rare Disease Advocacy...Think back to any time you shared about your rare disease with someone. Perhaps it was with a stranger, and it was just in passing. Perhaps it was...reactionscomments
What Are Rare Kidney Diseases?...In the United States, a kidney disease is considered rare if it affects fewer than 200,000 people. There are more than 150...reactions5comments
How Are Rare Kidney Diseases Diagnosed?...Many rare kidney diseases cause long-term damage. This damage can cause the kidneys to work less and less well over time. So...reactionscomments
What Type of Doctors Treat Rare Kidney Diseases?...The kidneys filter extra water and waste out of the blood and make urine. They also make hormones that help control blood...reactionscomments
What to Know About Newborn Screening and Rare Diseases...Newborn screening (NBS) is a program in the United States that tests all babies for certain treatable medical conditions. Early detection and...reactionscomments
What Is a Rare Disease?...The definition of what makes a disease rare is different around the world. In the United States, the government says that a...
Reflecting on My 20th Anniversary With My Rare Disease...My life was upended because of a viral infection 20 years ago. In the fall of 2003, I was working in a...reactionscomments
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
