FDA Approves Gene Therapy: A Rare Disease Parent Advocate Reflects on Hope and Challenges Ahead...Sickle cell disease (SCD) is a genetic disorder characterized by abnormal red blood cells with a crescent shape....Reactions0reactionsComments3 comments
Living With a Rare Disease...If you have a rare disease, it is likely that managing your health insurance will be a time-consuming effort....
Parenting While Managing a Rare Disease...They might imagine being grandparents one day. However, a rare health condition may bring a new reality....
Staying Informed on Your Rare Disease for Better Advocacy...I often joke that I would probably get more continuing education credits in a year than most of my doctors!...Reactions0reactionsComments1 comments
The Journey of Diagnosing a Rare Disease...The quest for a rare disease diagnosis is often referred to as a "journey" or "odyssey." The reasons it may take years...
Caring for Someone With a Rare Disease...Caregiving for a loved one with a rare disease is both rewarding and challenging....
Cost of Living With a Rare Disease...A child hospitalized for a rare condition stayed 9.1 days on average compared to 2.8 days for a child with a common condition....
Strategies for Coping With a Rare Disease...On average, it takes 6 to 8 years for a person with a rare disease to get an accurate diagnosis....
Finding a Job That Fits Your Health Needs...Reputable companies recognize that a great deal of work goes into making a sale and will offer a salary plus commission....
Building a Caregiving Team: Finding In-Home Help...Life with a rare disease can require extra at-home help and support....
What to Know About Getting a Second Opinion...It is normal to get a second opinion when you are faced with a serious health issue. Many people do it....
Don't Put Things Off With Rare Disease...I mean, everybody forgets things, but let's say, in my case, it's not a once-in-a-while issue....Reactions0reactionsComments1 comments
A Rare CHANCE Life...Then a year came & things were getting worse....Reactions0reactionsComments1 comments
Tips for How to Set Boundaries With Others...Being mindful of utilizing healthy communication can make a big difference in relationships, especially during a confrontation moment of setting a boundary...Reactions0reactionsComments4 comments
Transitioning to Adult Care With Congenital Adrenal Hyperplasia...A useful tool is a medical summary....Reactions0reactionsComments0 comments
Early Intervention Gave Me Hope...Each new victory is a miracle that we, as a family, will never take for granted....Reactions0reactionsComments1 comments
Calling Out with Grace...Recently, I completely disagreed with a statement from a GI specialist on TikTok about what it feels like to undergo an esophageal manometry...Reactions0reactionsComments3 comments
