When I ask a patient about their family history, I do so to offer the most accurate risk of disease I can for them or their children. So when a…
Healthcare costs in the United States are rising. This is due to many factors, such as inflation, prescription drugs, and behavioral health. The result has been a redefinition of a…
David Rowland, age 85, has been nourished from food, not chewed, and swallowed, but inserted into his stomach through a permanently placed tube, for the past 12 years following treatment…
Athletes experiencing multiple brain injuries now have more to worry about than ever. Excessive traumas to the brain common in sports like boxing and football, are now being linked to…
Imagine that your loved one is diagnosed with a rare disease. The first thing you do is to go to the internet to understand what you can about this disease…
The CDC reports that approximately 17% of parents in the U.S. have a disabled child. These parents not only cope with the stress that accompanies their attempts to provide stability,…
What does it mean to you to be living with a rare disease or chronic illness at this time of year? Over the years, since I was diagnosed I've never…
This article was written by and shared with permission from Shannon Wieloch, MS. Shannon is a certified genetic counselor and patient advocate for the Aicardi-Goutiere Syndrome Advocacy Association and founder of Stork Genetics.…
In a recent article by Bailey Martens, she describes the struggles she and others have faced being disabled as journalists and brings light to the importance of accessibility in the…
In an exciting and heartwarming shift towards inclusivity, the world of sports is embracing a new era of diversity—one where disabled athletes are not only welcomed but celebrated for their…
This article was written by and shared with permission from Shannon Wieloch, MS. Shannon is a certified genetic counselor and patient advocate for the Aicardi-Goutiere Syndrome Advocacy Association and founder of Stork Genetics.…
Patient Worthy's award-winning podcast "Wait, How Do You Spell That? A Rare Disease Podcast" is back with a new episode. On this episode of the podcast, we discuss the role…
Patient Worthy collaborator Heal Canada has recently released the 5th edition of its digital magazine E³ Advocacy---Empower, Engage, Educate. This publication is dedicated to sharing articles, reflections, news, and resources…
Researchers discovered a version of the Cas protein that fits into adeno-associated viruses (AAVs). This virus can be engineered to deliver targeted therapy to cells and is a common approach…
Women who undergo allogeneic hematopoietic cell transplantation (alloHCT) face significant treatment-related challenges regarding fertility. However, science seems to be overcoming many treatment-related fertility challenges after alloHCT and successful pregnancies are…
Patient Worthy is proud to announce its participation in Health Awareness' 2024 Q3 Rare Disease campaign. Health Awareness, which publishes healthcare news, information and personal insight stories for readers in…
Becker's Hospital Review Source: Two racial groups see rise in breast cancer rates
The U.S. Food and Drug Administration has announced a public meeting set for Wednesday, October 16, 2024 to discuss the creation of a Rare Disease Innovation Hub. The meeting is…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more. Jonathan…
Globally, an estimated 39.9 million people live with human immunodeficiency virus (HIV). HIV is an infection which, over time, damages the immune system. This condition can be spread through sexual…
By: Harsha K Rajasimha, Ph.D., Founder and CEO of Jeeva Clinical Trials Challenges Unique to Cell and Gene Therapies (CGTx) Clinical Trials Cell and gene therapies (CGTx) have emerged as…
On July 11th Dr. Mathew Winton went to Capitol Hill with senators and staff from both parties to discuss collaboration with the FDA regarding the pending termination of the Priority…
In unedited, early-access research published in Nature, a team of researchers explain that an estimated 60% of people with neurodevelopmental disorders remain undiagnosed, despite comprehensive genetic testing options. In many cases, this is…
Recently there has been an increasing amount of research attempting to control CRISPR gene-editing systems. These systems are found in many types of bacteria as a defense against viruses. The…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
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