How My Therapist's Questions Help Me Manage Medical Trauma...As a person with a history of medical trauma related to my rare diseases, sometimes I put expectations on myself that are...reactions7comments
Embracing Mindfulness: 31 Affirmations for Rare Disease Caregivers...Reflecting on the past year, I realize that last year was a test of self-discovery, leading me down a path I never...reactionscomments
Are Forums Still Relevant in the Social Media Age?...One of the most exciting parts of the advent of the internet was the ability to quickly communicate with others from around...reactionscomments
Caring for a Child With a Rare Disease: Vacations? What Are They?...As parents, we cherish the moments when we can create lasting memories with our children, especially during vacations. However, for those of...reactions1comment
FDA Approves Gene Therapy: A Rare Disease Parent Advocate Reflects on Hope and Challenges Ahead...Today, I want to share with you the mix of emotions that have flooded my heart as a 15-year rare disease parent...reactions3comments
Mourning the Loss of the Old Me...I’m often asked, “How did you come to terms with how your rare disease changed your life?” or “How did you mourn...reactionscomments
Summer With Sun Sensitivity...I love summer — the sunny weather, staying light outside later, and vacations. I live in an area filled with parks, trails...reactionscomments
Do You Take Rare Disease Rest Days?...As a person who suffers from a rare and chronic disease, every day is a calculation dependent on my energy levels and...reactions2comments
Caregiving, Advocacy, and the Drive to Keep Going...If you are a caregiver or a parent of a child with a rare disease, do you ever feel alone, confused, or...reactions1comment
How Educating Myself About Treatments Probably Saved My Lungs (If Not My Life)...The day I was diagnosed with MAC lung disease, alarmingly, my pulmonary doctor's first question to me after confirming the diagnosis was,"How...reactions9comments
How Is Hemophilia Treated?...Hemophilia is a bleeding disorder that prevents the blood from clotting properly. This can cause excessive bleeding, especially in the muscles, joints...
How Is Mucopolysaccharidoses Treated?...Mucopolysaccharidoses (MPS) are a group of rare genetic disorders that affect the body's ability to break down a particular type of sugar...
Groin Stronger: How My Body Is Learning to Trust Itself Again...When I injured my groin putting on a pair of pajamas last year, I had no idea it would lead to a...reactionscomments
Sajjona: Trisomy 18 Thriver...Sajjona was born on October 3,2017. She weighed 3lbs 9 oz and was 15 3/4 in long. Shortly after birth she was...reactions3comments
Ignored Symptoms...I became sick and was treated by doctors who only diagnosed patients by what the books say! They did not listen to...reactions2comments
When Rare Disease Needs Don't Make Sense to Others...Living with a rare disease comes along with many complications – some medical, some financial, some psychological, and some social. In my...reactions4comments
'It Takes a Village...' Building a Supportive Rare Disease Village...When you become a parent, people say you will have a village that will be there for you every step of the...reactionscomments
How Clinical Trials Are Transforming the Future for Rare Disease Warriors...Prior to becoming a rare disease caregiver, I must admit that I overlooked and even doubted the significance of clinical trials. Historical...reactionscomments
Fighting for Rare Disease Medication Coverage...Living with a rare disease comes with a variety of complications. Some of these complications are physical due to the medical nature...reactions3comments
The 2024 Social Health Awards Program...Editorial Note: Nominations for 2024 are now closed. We are very excited to announce the launch of the 2024 Social Health Awards...reactionscomments
