By Danielle Bradshaw from In The Cloud Copy 19-year-old Marky Jaquez’s feet have never touched the ground because the sensitive skin of his soles would tear away. As such, he…
Brooke Ramirez's pregnancy with her first daughter went as planned, and her new baby Trinity passed her developmental milestones. It wasn't until she was five months old that they noticed…
This week I heard from a grandfather who had been wanting to take his grandson fishing. The grandson had always been too busy and had far too many organized activities.…
By Natalie Homan from In The Cloud Copy Rochelle was a 28-year-old mom of two when she went to sleep one night feeling perfectly normal. A few hours later, she…
Continued From Part Two Written by Payel Bhattacharya I hope for aid from the government to cover the high cost of subsequent medicines including anti-rejection medicines, radiological and lab…
Continued From Part One written by Payel Bhattacharya Pharmaceutical science has medications to control the pain. I was initially put on medicine but it mostly didn’t contain the pain. I…
By Payel Bhattacharya, living with von Hippel-Lindau syndrome I, Miss Payel Bhattacharya, was an unusual child. I was never concerned with petty things, the trivia, the dregs in life. My…
Trevor O'Sullivan Trevor O'Sullivan, who lives in Ireland, has cystic fibrosis (CF). He has undergone two liver transplants. He was the 42nd person in the country to have this surgery.…
By: Natalie Homan from In The Cloud Copy Connie Elson was a happy, independent little girl before she started showing worrying symptoms at the age of four. After many doctor…
By Jodee Redmond from In The Cloud Copy Hannah Witton, a YouTuber with 600,000 subscribers to her sex and relationships channel, got tired of hearing comments that people with disabilities…
Because I will be looking for a job from a rare but certainly not unique place of being, I decided to reach out to a mentor who lives with the…
By Jodee Redmond from In The Cloud Copy Assemblywoman Nicole Malliotakis (R-East Shore/South Brooklyn) introduced Ava Rose Garnett in New York’s Capitol building in Albany recently. Miss Garnett is a…
By Danielle Bradshaw from In The Cloud Copy Sean and Josie Kelly, a New York native couple, have had a newborn son named Sawyer who was born with a rare…
By Caitlin Seida from In The Cloud Copy If you've never heard of CDG, or congenital disorders of glycosylation, you're not alone. The rare family of diseases, all inheritable, are…
According to a story from The Charlotte Weekly, local resident Kevin Tobin recently ran 400 laps around his house---the equivalent of a marathon---to help raise money for Dan Donoher, a…
George and Josie Taylor fell in love in their 20s. 52 years later and happily married, the couple believed that they could conquer anything together. But COVID-19 threw a…
On Wednesday April 22nd, 2020, the World Orphan Drug Congress held a one hour webinar that was focused on how the rare disease community could respond to the ongoing coronavirus/COVID-19…
For Mallory Holloway, precautions to avoid lung infections have been a part of her daily life for a long time. This is because she lives with cystic fibrosis, a rare…
According to a story from Yahoo News, there's no denying that the coronavirus/COVID-19 pandemic is an unprecedented experience for millions of people around the world. However, it can be especially…
With COVID-19 spreading across the country, many people are now thinking of how to keep their friends, their families, and themselves safe from the virus. But for those whose…
According to a story from koco.com, the community of Ada, Oklahoma, recently held a birthday celebration for a local affected by Alexander disease. Hunter Goodwin recently turned 18 years old,…
Uncertain times may be the understatement of the year so far. When the news of COVID-19 (coronavirus) caught our attention, there were a lot of people frozen in disbelief and…
According to a story from Spectrum News, the Andrews family has been dealing with a rare disease called Niemann-Pick disease type C for years. Parents Pam and Chris knew early…
According to a story from Wexford People, 8-year-old Mia-Lily Ruttle wants to spread some hope to people around the globe. The girl, who has neurofibromatosis, was upset by the impact…
Michael and Armené Kapamajian were at home in Los Angeles settling in with their one week old baby, Sasoun, when their doctor called and asked them to come in…
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