February 28, 2022 is celebrated annually as Rare Disease Day. This is a major event for the rare disease patient community that helps spread awareness and shine a light on…
According to a recent article, Trialbee and ERGOMED have partnered to become the platform for patient recruitment for their new Rare Disease Innovation Center. Trialbee Trialbee is the leading platform…
Eosinophilic-associated disorders are a group of conditions characterized by heightened levels of eosinophils, which are a type of white blood cell within the immune system. One of these disorders is…
Nicole Burns’ great grandfather left her his house and a portion of his 100 acres. According to a recent article in STAT News, Nicole also inherited her great grandfather’s heart…
Policy regarding many topics varies throughout America as one moves from state to state, and rare disease policy is no different. Because of this, getting a holistic view of where…
According to a recent article, a team at the Heart Institute is working on creating a guide to help cardiologists decide what treatment is best for patients diagnosed with anomalous…
The question plaguing the geneticists about the Burns family was: how have they survived? In 2016, several geneticists theorized that certain people may have a good-gene bad-gene scenario taking place…
The 300 million people living with rare diseases seldom receive appropriate medical treatment. Unlike common chronic diseases for which there are established and constantly evolving treatments and interventions, those with…
A popular book by Dr. Seuss that is often given to graduates is Oh The Places You'll Go. Now, suppose Dr. Seuss had entered the rare disease world. Perhaps he…
Written by Matt Horsnell, Community Manager, TREND Community TREND Community is a leader in evidence acceleration through social data exploration for rare and chronic illnesses. Patient Worthy is at the forefront…
It's officially Rare Disease Week, which is being celebrated from February 22nd until March 2nd. Every year, we take this week to to recognize, support, raise awareness, and advocate for…
Dr. Douglas Marchuk, professor of genetics at Duke, has spent years studying the genetics of cardiovascular disease. According to a recent article in the Atlantic, his research at the University…
Claire Barrow is a 14 year old CEO, entrepreneur, rare disease patient, and advocate for the rare disease community. She is the founder and CEO of an app called RareGuru which…
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As we know, it can be incredibly difficult to receive the proper diagnosis for a rare disease. In fact, it typically takes at least seven years and numerous doctor's appointments.…
If you have chronic pain like I do (mine is caused by a movement disorder called dystonia), or one of many other thousands of health conditions, or just dealing with…
Rare Disease Week 2022 is taking place this year on February 22nd to March 2nd. Though normally held in Washington, DC, the EveryLife Foundation for Rare Diseases, which organizes the…
A year ago, Paddy Doherty’s doctor told him that he had a rare hereditary disease called transthyretin (ATTR) amyloidosis, the same disease that had killed his father. As reported in…
Rare Disease Day, which is recognized each year on the last day of February, is probably the biggest day for rare disease patient advocacy annually. There are always a wealth…
According to a study published in PLOS Medicine, only around half of pragmatic or 'real-world' trials collect data as reported by patients or involve patients as partners in research. This…
According to a story from Al Jazeera, the country of Panama is the only one in Central America with a law on the books that is specifically related to rare…
On January 27, 2022, The EveryLife Foundation for Rare Diseases, in partnership with the Biotechnology Innovation Organization (BIO), National Health Council, and Pharmaceutical Research and Manufacturers of America (PhRMA), hosted…
A study recently published in the American Journal of Transplantation evaluated whether or not transplanting the kidney of a pig could be a viable and safe options for human patients. This study…
For the last seven years, the Global Genes Rare Compassion Program has been providing medical students with an opportunity to bond with patients and families who have been diagnosed with…
Julia Lefelar, a resident of Gaithersburg, MD, was telling a friend about her years of seeing different doctors trying to find the cause of her illness. After a while, her…
The Critical Path Institute (C-Path), formed in 2005, is a nonprofit, independent (public/private) partnership. The Institute evolved from the FDA’s 2004 White Paper known as the Critical Path Report and…
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