On March 23, 2023, the Rare Disease Legislative Advocates (RDLA) hosted its monthly webinar. These webinars help provide updates to the rare disease community on legislation and other policy initiatives…
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…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
The complexity of rare diseases makes communication between adults involved with the care of these children a vital tool. Communication and mutual trust are of the utmost importance. About the…
JScreen is a non-profit organization headquartered at the department of Human Genetics at Emory University in Atlanta. JScreen offers genetic testing and educational services, such as genetic counseling. JScreen's mission…
Ezri Care Artificial Tears, as well as nine other ophthalmologic brands that create artificial tears or eyedrops, have been linked to dangerous Pseudomonas aeruginosa infections in people across sixteen different…
On March 9-10, 2023, Dynamic Global Events hosted the virtual Global Innovation in Patient Advocacy conference. This event was geared towards various stakeholders in the rare disease space and was…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
Receiving a diagnosis can be difficult, and when you add into the equation that it’s for a rare disease, it can be a very lonely and isolating time. There is…
Contributed by Critical Path Institute (C-Path) and republished by Patient Worthy - find the original source article here. C-Path’s CDRC is positioned to inform future clinical trials for diseases of…
As reported by Valley News Live, Senator Amy Klobuchar (D-MN) has long been a supporter of the rare disease community. In the past, Senator Klobuchar has spoken at virtual press…
Raising rare disease awareness is incredibly important - not just to spur research, but to validate the experiences of those within this community. Around Rare Disease Day on February…
According to a story from sciencex.com, Queen's University Belfast, University College Dublin, and a team of 33 other partners have come together to start the All-Ireland Rare Disease Interdisciplinary Research…
For the first two years of his life, Rafe Hibben seemed to be progressing like a relatively healthy little boy. But when he was two years old, Rafe’s health went…
For the last eight years, the National Organization for Rare Disorders (NORD) has developed a State Report Card; the goal of this project is to evaluate the effectiveness of…
In a word, nothing. In two words, don’t panic. In two other words that are the same but are more positive and action oriented…be calm. Let me explain…when we experience…
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is a…
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…
It’s incredibly important to raise rare disease awareness, spread education, and contribute to a more inclusive and equitable world. One of the best ways to start? Through children. Teaching the…
From February 28 to March 2, rare disease advocates met in Washington, DC for the 12th Annual Rare Disease Week on Capitol Hill. Organized by Rare Disease Legislative Advocates (RDLA),…
Read Parts 1 and 2 of Katie's story, where we discuss the diagnostic journey, precocious puberty, and Katie's ZMYM2-related disorder diagnosis. Potential ZMYM2 Symptoms and the Need for Research The geneticist mentioned that symptoms…
February 28th is recognized as Rare Disease Day around the world each year. This day is intended to bring recognition and awareness to the plight of the millions of people…
Before you continue reading, make sure to check out Part 1 of Katie's story. True Precocious Puberty: The First Official Diagnosis The endocrinologist first ran a blood test, later followed with a…
Katie Brown, age 15, loves learning Spanish, swinging, and special effects makeup. In the future, she is considering a possible career as a writer or a special effects artist; she…
Emergency Room (ER) doctors are gradually being replaced by physician assistants and nurse practitioners. The Neiman Institute reported that between 2005 and 2020 the number of ER visits with midlevel…
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