We introduced Patient Worthy's newest and first Contributor living with Cushing's Disease in, On a Mission to be Fit and Fabulous, Meet Liz. This is Part 2 of Liz's official interview. Part…
We introduced Patient Worthy's newest and first Contributor living with Cushing's Disease in, On a Mission to be Fit and Fabulous, Meet Liz. This is Part 1 of Liz's official interview. Part…
Fundraising isn’t easy. Like, it’s beyond not easy. But when the cause is right, you’ve just got to try. And the Reardons certainly have a good cause. When their son…
Heather Smith, who is the President and Co-Founder of SCID Angels for Life Foundation, is one tough cookie. Smith has dedicated her life to helping other parents as a result…
Listen up, people! This is important—especially if you’re an expectant mother! This article featuring a video in Rare Disease Report, is about an incredible mom named Amanda Miller and her son, Evan. Evan…
We all know the saying: April showers bring May flowers. But did you know that April sharing brings May caring? May is Vasculitis Awareness Month, and the Vasculitis Foundation has…
I love stories where people get what’s coming to ‘em! No, I don’t mean bad-guys comeuppance stories (although I DO enjoy an occasional one). I’m talking stories of deserving individuals…
above photo by Sandro Georgi Photography Kristina was symptomatic when she was around 12 or 13 but she wasn’t diagnosed with narcolepsy until over a decade later at 24. She thinks…
When she was two years old, Terry was diagnosed with tyrosinemia, a rare metabolic disorder makes the body unable to break down the amino acid tyrosine. Tyrosine is an important building block of…
Although I’m no “spring chicken,” I still grapple daily with the reality that innocent babies get sick and die, or that they don't die, but they languish and suffer; it’s…
...But you didn’t order fries and you certainly don’t want the combo meal! I recently read about Kelly du Plessis, a Mom in South Africa whose 6 year old son…
Kudos and congratulations to TV station, KCRA 3 for heading up a special blood drive! They put the spotlight on J.J. and Carson Huish, twin boys who have Severe Combined…
Liz is living with Cushing's Disease and is on a mission to be happy and well Patient Worthy is so excited to welcome Miss Liz Calabro to our family of incredible…
Photography by Sandro Georgi Photography Nolan is an incredible person and father who is living with dystonia. He hasn't let the movement disorder hold him back from anything, even running a…
HEY KIDS! Are you tired of people not knowing about primary immunodeficiency? Take these 3 steps to teach others what PI means to you: First, THINK ZEBRA! What does that…
It's true—there's power in numbers, especially when it comes to living with a rare disease. Inside the hereditary angioedema (HAE) community, the term "HAE" is thrown around willy-nilly. It's a…
I have lost two cousins and a very inspiring friend to idiopathic pulmonary fibrosis (IPF). So I’m very aware that: There’s a genetic component to the disease (if more than…
Aplastic anemia. What is that? In simple terms, it's a condition that causes your body to cease making an adequate number of blood cells. It's a very serious condition, and…
Looking for a good, concise description of common variable immune deficiency (CVID)? You could do a lot worse than to watch this video from the Children’s Hospital of Pittsburgh of…
Remember me? I’m the girl with big ambitions who refuses to allow my illnesses to get in the way. Within two months of being diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS),…
Mika Covington was diagnosed with cystinosis when she was 10 months old, and has struggled with its effects throughout her life. Cystinosis is usually diagnosed before the patient's second birthday. It's…
As a writer, every once in a while, I'll have an "A-HA!" moment: Usually when I realize my perception about something is off kilter, and the truth suddenly becomes apparent.…
Ankylosing Spondylitis (AS) is a form of inflammatory arthritis that most commonly affects the spine and is thought to have its roots in genetics. As symptoms worsen, the inflammation can travel…
Raise your hand if you've called out sick from work or stayed home from school for something as simple as the common cold? Well, I'm just going to assume most of…
Cheryl Jackson lived most of her life not knowing why she was chronically ill. She had recurring sinus infections, bronchitis, and pneumonia. In her 40s she experienced GI issues that forced her…
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