The xenotransplant involved transplanting Yucatan miniature pig kidneys into macaque monkeys with 69 genetic modifications. One monkey survived for over two years, offering hope to the team of Harvard…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Two days before Thanksgiving in 2022, I was diagnosed with mouth and neck cancer. I had my first surgery in my mouth to remove the mass on December 20, 2022.…
One of the most successful healthcare services benefiting the public is newborn screening. Unfortunately, this life-saving health initiative is not provided for all rare diseases in some U.S. states. As…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
Written by Sara Tompkins NOTE: The perspectives voiced in this article are solely those of the author. The development of drugs for rare diseases has always been a complex and…
From September 19-21, 2023, the Global Genes RARE Advocacy Summit was held in San Diego, CA. This event is a yearly convergence for rare disease stakeholders with a special emphasis…
If you have read my books, seen my blogs, or watched my videos, you know that I live with a neurological movement disorder called dystonia, which I've had since 2001.…
Genomics is revolutionizing healthcare processes, offering the potential to enhance the lives of numerous individuals by enabling the early detection of treatable disorders and providing lifesaving therapies. Every year, thousands…
From September 7-9, 2023, the Rare Fair took place in Research Triangle Park, North Carolina, with the option for online attendance. This event, which originated in 2018, is organized by…
The 2022 Medscape Physician Suicide Report shows that physicians, compared to the general public, have double the rate of suicides. Amna Shabbir, a doctor of internal medicine, felt compelled…
From September 7-9, 2023, the Rare Fair was held in Research Triangle Park, North Carolina, and was also available for attendance online. This event began in 2018 and has been spearheaded by The Dash…
From September 7-9, 2023, the Rare Fair was held in Research Triangle Park, North Carolina, and was also available for attendance online. This event began in 2018 and has been…
Dozens of Ryan Wilson Palmer’s family and friends recently celebrated an early birthday after he received a devastating diagnosis of Creutzfeldt-Jakob disease. A few months ago 49-year-old Ryan Palmer of…
Antibody-drug conjugates (ADC) are one of the fastest-growing anticancer drugs. BioNTech’s licensed ADC is now in Phase III. According to a report in BioSpace, BioNTech is attempting to compete with…
According to a story from The People's Pharmacy, a Senate report from 2018 highlights how opioid manufacturers regularly donate large sums of money to professional organizations and patient advocacy groups.…
Social media has become a vehicle for customer complaints and the companies are listening. Estimates are that almost two-thirds of dissatisfied customers have received a response to their online…
A team of surgeons at the Langone Institute performed its fifth animal-to-human transplant using organs from genetically modified pigs. The Revivicor company modified the organ in order to prevent rejection…
When a family member is unable to care for themselves, proper training is essential for all parties involved. A case in point was the crisis Patti LeFleur was unable…
65 million people in the U.S. who are on Medicare are prescribed medications according to a mid-year KFF healthcare survey. 60% of these individuals are prescribed a minimum of…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
A 15-year search for a diagnosis by Lilly Grossman and her parents ended in 2013. Lilly became the first person in the world to be diagnosed with ADCY5-related dyskinesia.…
An Intern’s Journey When my summer internship with Red Nucleus began, I had little familiarity with rare diseases and the life science industry. A distant relative of mine struggled with…
Unfortunately, gaining access to care within the rare disease space can be difficult. There is often lesser education and awareness about rare conditions, less research performed, and poorer access to…
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