Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
According to a story from the East Bay Times, it was 2003 when Isabel Bueso and her family traveled to the US from Guatemala. She was just eight years old,…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
May 15th is recognized each year as Mucopolysaccharidosis (MPS) Awareness Day. The goal of this day is to help spread awareness about this group of diseases among the general public…
A family is grieving for their daughter and taking it one day at a time in the face of a terminal diagnosis. Kelly and Andrew Mills became pregnant with…
According to a story from governmenteuropa.eu, Professor Susanne Kircher, who is associated with the Austrian MPS Society and the Medical University of Vienna, writes about the state of rare diseases…
Xconomy.com has just released that funds have been raised for a variety of companies investigating therapies for rare conditions. Unfortunately, novel therapies and inventions cost million of dollars to develop. Thankfully,…
The 2018 MPS Symposium August 2-4, 2018 People who attend the symposium can expect to learn about that latest in MPS research as well as workshops about best practices and…
When others learn that you are the parent of a child with a rare disease, they most likely correctly assume that doctor appointments and hospitals might be involved. Yet few…
Much has been said about the way in which social media is affecting society today. Recently, many of the remarks have been negative. Yes, it has been used by some…
REGENXBIO Inc., a pharamaceutical company specializing in gene therapy, just shared that it launched a Investigational New Drug application to conduct Phase I/II trials on the new therapy they're developing,…
Recent findings from research done at the University of Pennslyvania indicate a new biomarker associated with a group of rare metabolic diseases called mucopolysaccharidoses (MPS). A biomarker is a measurable…
Losing a child is a loss like no other—the most devastating experience a parent can face. And for one daddy who lost his little girl to mucopolysaccharidosis, a very rare genetic…
We all have those memories of Christmas time when we wanted that one toy so badly. We would have gladly given an arm or a finger to get that gaming…
Lately, I've been learning a lot about mucopolysaccharidoses (MPS). MPS covers a lot of territory. It refers to when the body is missing a particular enzyme--it doesn't matter which one:…
Life is a reflection of our attitude, and we can learn a thing or two from Alena Galan, a young woman who’s living the dream as a college freshman, hosting…
You may hate that these days everything seems to turn pink for the whole month of October. Or you may appreciate efforts to associate the color pink with Breast Cancer…
Remember the Parkinson’s disease Ice Bucket Challenge mania that spread across the globe? Did you find yourself overflowing with ideas about equally awesome challenges or ways to raise awareness and…
We have all heard the phrase knowledge is power. Everyone, at some point in their lives, has to learn how to do something. From cooking, to driving, to using the…
MPS Awareness Day has come and gone, but that won't stop us from spreading information! In honor of MPS Awareness Day (which took place on May 15th), we'd like to do…
Selfless. Alli Williams is selfless. The 17-year-old received an MPS I diagnosis as a baby. Unlike many kids with MPS, she was lucky enough to receive a bone marrow transplant--something she doesn't take lightly.…
Come one, come all! Well, if you have mucopolysaccharide (MPS), that is. The 30th Annual Family Conference is taking place this August in Colombus, Ohio and the National MPS Society…
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