From the perspective of a mother with a child who has a serious and rare medical condition, Pfeiffer syndrome. There are many reasons why the term “special needs” can have…
Broadway Belts for Pulmonary Fibrosis is a yearly musical and comedy fundraiser to fight pulmonary fibrosis (PF). Created 7 years ago to honor the memory of Associated Press theater critic…
On Thursday, March 30 – Saturday, April 1, 2017 at the Island Hotel, Newport Beach, California, members of the cystinosis community will gather to support their loved ones, suffering from…
This week, WorldSymposia™ is having their 13th Annual WORLDSymposium in San Diego! The goal of the symposium is to help researchers build a better understanding around lysosomal disease diagnostics, areas that…
Before 10 years ago, 40-year-old Cystic Fibrosis Advocate Jillian McNulty generally had her cystic fibrosis in check… so much that coworkers at the radio station for whom she worked for…
You can give without loving, but you cannot love without giving. -Amy Carmichael Don't Forget-- It's also National Donor Day. Give one of the ultimate gifts of love this Valentine's…
I love my husband. He is my best friend. When we stood before God and our family to exchange vows, we made a commitment for better or for worse. Wow,…
Got the post-Superbowl blues? Then check out these uplifting rare disease stories! One amazing young woman with cystic fibrosis got a sweet shout-out on Super Bowl Sunday, and another older…
Hopefully, everyone in the Lyme community knows of Yolanda Foster and her family's battle with Lyme. If not her, then perhaps Avril Lavigne. If not her, then maybe they know…
Recently, my boyfriend and I were looking at places to go on vacation before he gets deployed. He wants to travel internationally because this is his last chance for a…
When I was 15 and received my learner's permit, they asked if I'd like to be an organ donor. I was a little freaked out at the image of getting…
Happy Friday Patient Worthians! What happens when big pharma combines forces? Also, what are you doing in March? We have a conference for you! What are the complications of having multiple…
Update: In June of 2016, we had the pleasure of interviewing Aleeya Young, an amazing teen with CF. Well, this Sunday she will be receiving a $10,000 2016- 2017 Sacks for CF…
Patient Worthy quiere felicitar a Lisa D.! Felicidades por lograr la posicion #4 en Amazon Kindle y una calificación de 5 estrellas. Su libro es también # 1 en tres categorías con…
Cuando me uní a otros millones de fans obsesionados que veían lo que ha sido la popular episodio "Bubble Boy" en Seinfeld en 1992, no tenía ni idea de que…
Duchenne Muscular Dystrophy (DMD) is a degenerative disease that causes muscle weakness in the hips, thighs, shoulders and then later, in the heart and respiratory systems. This Australia family is…
February is Black History month and for the first week, Old Ways, a site dedicated to promoting good health through cultural foods, is celebrating with health foods! If you're like…
¿Cuánto cree usted que la media niña de cinco años de edad, pesa? De acuerdo con kidshealth.org, la respuesta es aproximadamente 45 libras. Ahora, ¿cuánto cree usted que una silla…
Tuesday, February 28th is Rare Disease Day. And while we will be at #RDDNIH on the 27th, you can participate in Rare Disease Day from anywhere in the U.S.! Check out some…
This Friday, February third is The American Heart Association's National Wear Red Day® for women's heart health! It will mark the 15th anniversary since the inception of this fundraiser. According the…
Si usted vive en Connecticut, y sucede que tiene una enfermedad rara, se están haciendo esfuerzos para ayudar a que su voz sea escuchada. Cuando usted es uno de muy…
Tyrosinemia is an inherited metabolic disorder that inhibits the body’s ability to process or break down essential amino acids found in common foods that are consumed. Tyrosinemia Type 1 attacks…
Meet Emily Deaton, de 21 años, de Mechanicsville, Virginia. Al igual que muchas personas con enfermedades invisibles, el viaje de Emily a un diagnóstico preciso era más de una pesadilla…
La enfermedad y la depresión. Con demasiada frecuencia, después de haber sido diagnosticado con una enfermedad crónica, los pacientes se dan por vencidos. Se retiran. Ellos dejan de intentarlo. Ellos…
Me encanta postres. Su "destacado" escrito al revés. Sólo hay algo para aliviar el de ser capaz de hundir sus dientes en algo dulce. Pero cuando se les diagnostica una…
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