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…
Crispr is no longer a buzzword. According to a recent article in The Guardian, it has become the ‘molecular scissors’ that will enable scientists to rewrite our genes or as often said,…
Rare Disease Day at NIH March 1, 2021 Rare Disease Day is held every year to help raise awareness surrounding rare diseases and the people that are impacted by them.…
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…
Research by scientists at Cornell University and Weill Cornell centered around the endothelial cells that form a barrier between tissues and vessels. They control the flow of fluid and substances…
10 Year Anniversary Celebration of The Orphan Disease Center at the University of Pennsylvania February 24-25, 2021 This virtual, two day long event will feature speakers in science and medicine.…
Raghav is a two-year-old boy born with an ultra-rare disease caused by a mutated GPX4 gene. He and eight other children are the only ones in the world who have…
Spiritual Self-Care Workshop Join embodied mindfulness Counselor Padma Gordon for a morning filled with discussion and meditation. The workshop includes a warmup grounding meditation followed by journaling and a conversation…
The last day in the month of February is recognized each year around the world as Rare Disease Day. The day serves primarily as a moment of spreading awareness about…
Policymakers Must Offer Solutions That Provide Patients with Lower Out-of-Pocket Costs For Critical Medicine In addition to coping with chronic illness, many patients are faced with the challenge of…
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…
Every year for the past six years the National Organization for Rare Disorders (NORD) has published a State Report Card on the progress of rare disease policies in the states.…
Tom Kean, the Senate Republican Majority Leader in New Jersey, is leading the charge to fully realize a recently partially approved bill, which would create a New Jersey Rare Disease…
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…
Genetic testing is being used more frequently to screen people for the hereditary risk of cancer, according to MedCity News. While advancements have been made and research is ongoing, there…
California Rare Disease Advisory Council Virtual Coalition Meeting February 17, 2021 Legislation to create a California Rare Disease Advisory Council (RDAC) will be introduced by State Senator Susan Eggman in…
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