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...

PBCers Organization hosts the 2018 PBC Conference to connect, learn and empower. The event is catered to patients, and their family and friends to...

“Rare Diseases 360° – Collaborative Strategies to Leave No-One Behind” This event will be the largest rare disease themed conference in Europe. The conference will touch...

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,...

Happy Friday Everybody! This week we're spotlighting three patient stories: an ALD patient full of optimism and love, a beauty pageant contestant with a noble...

According to a story from biotechconnectionbay.org, medical researchers are beginning to more closely investigate that possibilities that drug repurposing, or using old drugs for...

According to a story from statnews.com, a drug derived from substances originating in the cannabis plant may be nearing approval by the U.S. Food...

  The pharmaceutical company Lonza has just opened a new state-of-the-art manufacturing facility to produce cell and gene therapies. You can find the full press...

According to a story from Summit Medical Group, a recent study indicates that survivors of testicular cancer may have a greater risk for heart...

According to a story from wired.com, a new genomics marketplace called Helix will soon start selling genetic tests directly to consumers. These tests are...

According to a story from news.vanderbilt.edu, Charlotte Haffner has been working hard to advocating on behalf of amyloidosis patients. She recently underwent a heart...

According to a story from Charcot Marie Tooth News, a small subdivision of the National Institutes of Health (NIH) is leaning into its role...

According to a story from PR Newswire, the pharmaceutical company Therapix Biosciences recently announced the results of a Phase IIa study for its drug...

According to a story from medpagetoday.com, researchers are beginning to realize that symptoms of pediatric spondyloarthritis present themselves in a distinct way when compared...

Hope everybody is enjoying the warm weather! This week we have patient stories about a woman with MS who started a support group and a...

According to a story from QQ Malaysia Online, patient advocates are looking for ways to raise awareness of rare diseases in Malaysia and get...

According to a story from scimex.org, a recent data review is calling into question the previously held consensus that common pain medicines such as...

No matter which way you spin it, Ehlers-Danlos syndrome (EDS) is generally not a great time. EDS is a rare genetic condition that affects...

According to a story from ankylosingspondylitisnews.com, a significant proportion of patients stopped taking a biosimilar for infliximab within six months of transitioning to the...

According to a story from The Irish Times, a new campaign is encouraging people with the rare lung condition idiopathic pulmonary fibrosis to keep...

A recent story from Science Daily is highlighting just how difficult it can be for patients with rare diseases to get an accurate diagnosis....

According to a story from Neurology Advisor, a retired physician experienced the challenges of being a rare disease patient first hand after being diagnosed...

According to a recent story from pm360online.com, the pharmaceutical company Shire announced that the marketing application for its drug product lanadelumab has gained approval...