Before you read on, make sure to check out Part 1 of Savannah's story. In Part 1, Savannah's mom Lacey shared the diagnostic journey that led to Savannah's diagnoses: EoE, LGS, and…
For many people with a rare condition, sharing their story can be personally fulfilling—and it can help others realize that they are not alone. More so, shared stories can encourage…
Right now, there are approximately 100 people in the world who have been diagnosed with Ogden syndrome, a rare neurodevelopmental disorder. Lacey Smith’s 11-year-old daughter Savannah is part of this…
When Sarah Williams Maxwell was 18 months old, she was diagnosed with type 1 diabetes (T1D). Outside of managing this condition, Sarah was relatively healthy until 2014, when her diagnostic…
Before you read on, make sure to check out Part 1 of Kristin and Kayden's story. In Part 1, Kristin discusses the diagnostic journey and how Kayden was diagnosed with a dermal…
The Lashoff family loves living in St. Louis; they’ve been there for six years and can’t get enough of it, from watching hockey at the Enterprise Center to marveling at…
A rare disease diagnosis can conjure up a multitude of emotions, from relief at finally learning what is going on to fear or isolation when trying to figure out what…
Before you read on, don't forget to check out Part 1 of Jennifer's story. In Part 1, Jennifer shared her diagnostic journey and the four year stretch it took her to receive…
Gavin Chandler loves toy cars, watching Big City Greens, fans, the “Baby Shark” song, and anything that lights up or makes noise—including, his mother Jessica shares, the vacuum cleaner. He…
When Lachlan Lasikiewicz turned gray one day, his lips a frightening blue, his grandma and aunt didn’t panic. They simply wrapped him up in a blanket and held him close,…
Two and a half years — that is how long it took for the Roublick family to learn that their daughter Nicole had an extremely rare condition called autoimmune lymphoproliferative…
When Arica Svoboda thinks of her two children, Hayes and Hendrix, she can’t help but fill up with love. She tells Patient Worthy: “My boys are special. Their smiles and…
What would you do if you were told that your child had a rare disease? How about if your child had an ultra-rare disease, which affects fewer than 20 in…
February 28, 2022 is celebrated annually as Rare Disease Day. This is a major event for the rare disease patient community that helps spread awareness and shine a light on…
Judy was diagnosed at age 45 with the rare disease IgA nephropathy in 2019. The diagnosis changed her life forever. IgA nephropathy is difficult to diagnose until it has progressed,…
Rare Disease Day, which is recognized each year on the last day of February, is probably the biggest day for rare disease patient advocacy annually. There are always a wealth…
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Rare diseases are much more common than people think. The word "rare" is off-putting. But the word only pertains to each individual rare condition. Collectively, rare diseases are quite common.…
During the National Institutes of Health (NIH) Rare Disease Day at NIH event, a panel was held titled "From Kitchen Tables to Changing Paradigms — Advocacy as a Driving Force…
The National Institutes of Health (NIH) held its annual Rare Disease Day event on March 1, 2021 this year. This event showcases groundbreaking research, amazing rare patient stories, and more.…
As part of ongoing events surrounding Rare Disease Day, which is officially recognized on the last day of the month of February, Patient Worthy attended sessions of the 8th Annual…
An estimated 1 in 10 Americans, or 1 in 20 people globally, have or will have a rare disease at some point. Rare Disease Day takes place on February 28. Ultimately,…
Rare Disease Day at NIH March 1, 2021 Rare Disease Day is held every year to help raise awareness surrounding rare diseases and the people that are impacted by them.…
February 28th is known as Rare Disease Day, designed to raise awareness of rare diseases, patients, caregivers, and their experiences. As this day approaches, the American Kidney Fund (AKF) shared…
The aHUS Alliance has taken on a new project to raise awareness for atypical hemolytic uremic syndrome (aHUS) and the needs of the patient community, according to aHUS News. The…
Okay, I'll admit it -- I'm a bit of a reality TV junkie. So I have been watching Cheyenne Floyd's journey since her initial entrance on Are You The One? Season 3…
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