MSN News recently interviewed Dr. Laxmikant Palo, with the conversation focusing on the situations of people living with rare diseases in India and how to improve them. According to Dr.…
Despite the pandemic, there were many strides in the field of medicine and research in 2020. For example, researchers first discovered and identified a rare disease called VEXAS syndrome. The…
The Rare Sibling Experience March 25, 2021 Rare disease impacts extend beyond the patient themselves and can have a profound effect on families. Siblings of rare patients are placed in…
Journaling and Resilience Workshop Pamela Alma Weymouth will lead an hour long session of reflection and journaling. Learn self-acceptance and gratitude while writing about your week to cultivate resilience and…
No longer the new player on the team, next-generation sequencing (NGS) is well established as having an influence in clinical care. In recent years, NGS has been responsible for many…
Rare disease therapies have an exorbitant cost. Fewer patients means higher costs in order to support the development of treatments. In the United States, 966 billion was spent in 2019…
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Rare diseases are much more common than people think. The word "rare" is off-putting. But the word only pertains to each individual rare condition. Collectively, rare diseases are quite common.…
Rare Disease Day is February 28th. This year, it caused a lot of reflection among healthcare professionals and families impacted by rare conditions. How has the pandemic shifted progress in…
According to a recent article in Fierce Biotech, most cancers progress through constant cell division. Scientists at Vanderbilt University are determined to find the reason for this mysterious cell division.…
Dicaprio Bootle is on a mission: to become a star athlete in the NFL. However, he's preparing to give back along the way to his goal. Dicaprio is fundraising for…
As reported in NewsWise; rare drugs are few and far between, with a cliental of less than 200,000 Americans dissuading drug companies from taking on the enormous charge of developing…
Journaling and Resilience Workshop Pamela Alma Weymouth will lead an hour long session of reflection and journaling. Learn self-acceptance and gratitude while writing about your week to cultivate resilience and…
Over the last year, news of COVID-19 has dominated the headlines. Caused by SARS-CoV-2, a coronavirus, the global pandemic is now associated with 116 million diagnoses worldwide and 2.57 million…
Science 37 and Xperiome have entered into a partnership in order to allow for more viable rare disease research, according to an article in PR Newswire. If the partnership goes…
Congress has recently introduced a new bill that would have a significant impact on the rare disease community if it passes. The legislation, called the Speeding Therapy Access Today (STAT)…
A report, commissioned by the National Organization for Rare Disorders and released by IQVIA, has revealed that the majority of orphan drugs, 79%, treat only rare diseases. Despite this fact,…
Aljazeera recently published an article that highlights the difficulty several families have had waiting for a rare disease diagnosis. In the majority of cases, when the families finally received the…
Journaling and Resilience Workshop Pamela Alma Weymouth will lead an hour long session of reflection and journaling. Learn self-acceptance and gratitude while writing about your week to cultivate resilience and…
Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup…
A recent article in the journal Nature describes the first draft of human genome analysis and sequencing published in 2001 by the Human Genome Project international consortium. The consortium included…
When a patient is told that they have a life-threatening rare disease and then told that there is no cure, every effort is made to attend to their physical needs.…
Together, Takeda Pharmaceuticals and the Children's National Hospital have created a program that aims to create and improve a standard of care for rare disease patients. As these patients often…
During the National Institutes of Health (NIH) Rare Disease Day at NIH event, a panel was held titled "From Kitchen Tables to Changing Paradigms — Advocacy as a Driving Force…
Journaling and Resilience Workshop Pamela Alma Weymouth will lead an hour long session of reflection and journaling. Learn self-acceptance and gratitude while writing about your week to cultivate resilience and…
RARE on the Road 2021: Rare Disease Leadership Tour A Rare Disease Leadership Interactive Webinar March 23, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked together…
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