A recent poster presentation at the 2021 NANETS Annual Meeting focused on the RELAX study, which evaluated patient-reported outcomes from carcinoid syndrome (CS) patients being treated with telotristat ethyl. According…
A survey of oncologists has found that more education is clearly needed regarding cholangiocarcinoma. Specifically, more education would be beneficial regarding testing and targeting the mutations which cause the condition…
Rare disease patients often face more obstacles than others when it comes to healthcare. While we know this, it can be hard to judge the public's stance on the issue.…
A recent study, titled "Patient and caregiver experiences of living with acute hepatic porphyria in the UK: a mixed method study," investigated the disease burden faced by AHP patients and…
A team of great researchers need your help! While the researchers who devised this survey (see below for the link) have had a great response from people with Mal de…
A survey created by Eurodis, a European rare disease advocacy alliance, has shown that those living with a rare disease have a worse healthcare experience than people with a chronic…
Patient input is extremely important when evaluating treatments for rare diseases; Charcot-Marie-Tooth disease (CMT) is no exception. In order to understand the impact of different CMT therapies, researchers from the…
HAE Junior is a Czech-based patient organization aiming to improve the quality of life of children & youth with hereditary angioedema (HAE). It was set up in December 2019 in…
Not much is known about the novel coronavirus; medical professionals are working to learn more every day. One of those things we are trying to understand is how this virus…
Living with a rare disease can come with some difficulties, whether those are physical, mental, or financial. It is estimated that 30 million Americans live with a rare disease, a…
Modern medication has the ability to save lives and improve living standards. However, medicine is less beneficial when patients’ prescribed treatments are delayed, and entirely ineffective when patients forgo treatment…
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