Tags Posts tagged with "rare disease"

rare disease

After the 10th International Workshop on Waldenstrom’s Macroglobulinemia for researchers and clinicians, the IWWM10 International Doctor- Patient Forum will be held in the same...

Put Europe on your calendar for 2018! Usher patients, researchers and family members welcome to the two-day Symposium in July. For more information, contact ush2018@usher-syndrome.org

International Alliance Of Patients' Organizations hosts the 8th Global Patients Congress. 200 reps from different healthcare facets will provide expertise, connection, and knowledge related...

AKU Society is hosting it's 2nd International Patient Workshop in Liverpool's Bluecoat. The event is intended to educate about new scientific research, clinical trials,...

Alabama Rare hosts the 3rd Rare Disease Day Advocacy Training & State House Advocacy Event in Montgomery, AL. It's a great way for advocates to...

Alabama Rare is hosting the 5th annual rare disease genetics symposium with intent to educate and advise patients, caregivers and medical professionals on how...

Come to the 14th Annual WORLDSymposium in San Diego to learn more about the latest news and research in lysosomal diseases! Discuss the most...

The only conference in the Europe that shows guidance as how to involve patients through the process of clinical research. Industry Fees: $1,395 or ~ £1175...

According to an article from PRNewswire, the drug MVASI (biosimilar bevacizumab) was just granted marketing authorization by the European Commission. Developed by Amgen and...

Tiffany and Caleb isn't your typical engaged couple. They are passionately in love and excited for their wedding, but their romance could literally end...

Even though most in the medical field suggest that people think about their wishes as to how to handle end-of-life decisions, and complete the...

The Hempel family decided to take action against Vtesse and Sucampo Phamaceuticals who allegedly stole and sold their private information for profit, reported Forbes....

A team of scientists recently developed an electronic nose that detects Crohn’s disease and ulcerative colitis. Continue reading below, or follow the original story...

The Wahlstrom family of four, is getting a miraculous gift to help care for their two children suffering from Batten disease, reported CBS Minnesota....

TGIF, Patient Worthians! This week, kids went to bed wearing inside out pajamas and wishing for snow. Their wishes came true-- and so did the...

I have fantasized at times about living in a different era. How exciting to live in the times of knights in shining armor and...

Days in 2018, we have some great statistics on 2017! According to the United Network for Organ Sharing (UNOS), over 10,000 organ donations were made, marking the first...

America first started noticing South African runner Annie Bothma at the Roy Griak invitational in 2015. She came in third! Not only is she...

According to a story from wepclinical.com, the Creating and Restoring Equal Access to Equivalent Samples Act, also known as the CREATES Act, was introduced...

According to a story from Syosset Jericho Tribune, the charity basketball fundraiser called Hoops for Harrison is back again this year. The tournament was...

Although it never should have happened, at least the right course of action was taken! Reggie Bibbs of Houston, Texas was turned away from his...

At only six years old, Simeon Augustus Peterson, also referred to as "Mr. Pete," was diagnosed with Hansen's disease. From then on, he lived...

Nothing is worse for a family than hearing the word “cancer,” especially when it involves a child. The Tyson family was ready to start their...

Madison Simons, a 20-month-old child has visited the hospital more than 12 times and spent more than 50 days at the Baylor Scott &...
editor's choice

Happy Friday, Patient Worthians! This week we have articles about people working together on different types of rare disease teams. We have stories from a...