I second-guess every decision I make. Should I wear my hair pulled back, or will it just flop in my face all day long? Should I wear heels and risk…
Parents strive to make a child’s life better—even before the baby bundle comes into this world. The sacrifices parents make for their children are innumerable, and one dad from Mississippi…
Only 1 in every 250 people have familial hypercholesterolemia (FH) worldwide and it is widely underdiagnosed with more than 90% of people not knowing they have it. In fact, according…
We've all heard it before: "Stay positive! Look on the bright side! Don't let the little things get you down!" The fact of the matter is it's way easier to…
September is National Blood Cancer Awareness Month and September 15th is World Lymphoma Awareness Day. To find out more, check out the Lymphoma Research Foundation (LRF). Not only does this…
Rare diseases like ALS and SMA cause damage to motor neurons. Often, these conditions lead to death, in part because muscles in the chest are wasted away and the patient…
On September 28th, 2017 at 9 PM EST, a new online, mindfulness-based, stress reduction course will be given by none other than the extraordinary Julie Desch, MD. She is a physician…
"Be strong," they say. "Don't give up." However well-meaning the sentiment, those phrases sometimes ring empty. What does it even mean to be strong? To persevere? I think Jackie Barber's story…
The Indiana Hemophilia & Thrombosis Center in Indianapolis has long been a leader in innovative patient care. They teamed up with MicroHealth, a company founded by hemophilia patient Aaron Craig…
This year marks the end of a second decade of achievements for EURORDIS, now formally known as EURORDIS-Rare Diseases Europe. EURORDIS is a non-governmental alliance that is the voice of…
The International Foundation for Functional Gastrointestinal Disorders website has a section where patients can share their story. Hollie's story is one of the featured stories. Her story starts in 2009…
Most people do not enjoy going to the dentist, but for patients with down syndrome, this normal task is even more of an ordeal. Patients often have a difficult time…
On behalf of the CNF: Applications for the 2017 Harnett Mini-Grant: Now Being Accepted In January 2014, the Harnett Mini-Grant was founded by Mr. Michael Harnett, as an enduring memorial…
When I was undergoing a tough treatment and reeling from the death of my God-sister, I was definitely down in the dumps. I couldn't really walk and I was hooked…
As I was reading a post about Ehlers-Danlos syndrome on Stanford Medicine's Scope blog, a particular line caught my eye. The author of the post writes about "the moment [EDS patients] open our eyes…
Tammy Grover is a mama bear in every sense of the word. She keeps her cubs close and has dedicated her life to trying to help them survive. Two of…
Before I tell a story (that I first read in The Globe and Mail newspaper) about Joaquin Farias and his years-long quest to unlock the mysteries of dystonia, I must…
When it was “that time of the month” nearly everyone around me knew it. My parents knew that my snarky responses had less to do with my attitude and more…
The love between a father and his daughter is pretty unique. You may remember the story from a few years back of Emily Heaton asking her father, Jeremiah, if she…
It pays to have a friend who's a research endrocrinologist—especially when you have a rare and little-known disease like acromegaly. For Oregon-based teacher, Betsy Whispell, the friendship was a lifesaver. She…
What do you do when you have a disease called acromegaly that causes you to keep growing into a 7'1", 346-pound force of nature? If you're Dalip Singh Rana (aka…
According to the Times Recorder, Estelle is living with Tourette syndrome, which is a disorder of the nervous system. Those who suffer from the disorder exhibit uncontrolled, unwanted sounds or…
At 54 years of age, Kathleen was healthy and physically fit. She knew about her grandfather’s death at the age of 30 to a heart attack. She also knew about…
One night in March 2016,13-year-old Treyvon Summers experienced extreme pain that woke him up out his sleep. This was the start of him losing his mobility in both his legs.…
Whenever I feel the stress of life getting to me, I hop over to YouTube and search “random acts of kindness” or “heartwarming acts.” Some of the results? The police…
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