Living with Glanzmann’s thrombasthenia, an ultra-rare disorder, could be daunting for some. But for Esmeralda Vásquez, it’s her reason for giving back, raising her voice, and being a powerful advocate for all people with rare blood and bleeding disorders. Over the years, Esmeralda’s name has become synonymous with health equity and patient-centric care. She is […]
Glanzmann’s Thrombasthenia is a rare disorder that causes Cheyenne’s body to bleed constantly. CLEVELAND COUNTY, N.C. (WBTV) – You never, ever know what anyone else might be facing. Please meet Cheyenne McNeilly, a rising seventh-grader at Burns Middle School in Cleveland County. She was born in 2010 in Shelby with a cone-shaped head and some […]
A fun walk/run at Sauble Beach helped raise more than $6,000 for SickKids hospital Sunday morning. Article content The annual eight-kilometer Sauble Beach Chamber of Commerce event had about 60 participants. It has raised more than $40,000 in support of bleeding disorders over the last several years, said Dave Fretz one of the event’s organizers. […]
Glanzmann’s Thrombasthenia (GT) is a rare bleeding disorder, estimated to affect 1 in a million people. Compared to more “common” bleeding disorders such as hemophilia, GT receives a lot less attention when it comes to research and developments. Haemnet recently commenced the Glanzmann’s 360 Study which will explore the ways in which GT affects those […]
It’s no secret that not all bleeding disorders are created equally. A huge amount of time, research effort, and funding have improved our understanding of the impact of hemophilia on those living with it. Over time this has resulted in the development of effective treatments. By contrast, a brief glance at the number of publications […]
The last weekend of April 2022 was quite the weekend, to say the least. Board officers visited Dr. David Wilcox in his lab (the Kelly Weil Laboratory) at the Medical College of Wisconsin. The lab has been working for decades to make many advances in gene therapy including a specific type of gene therapy that […]
Join us for Rare Across America this February and March to meet your new and re-elected legislators, share your story, and make rare diseases a priority in the 117th Congress. Haz clic aquí para obtener información en español y para registrarte. WHEN February 22 – March 5, 2021 (Virtual Congressional meetings on March 3rd and […]
Wait how do you spell that? is a rare disease podcast produced by Patient Worthy. Patient Worthy talks about issues affecting people with rare and underdiagnosed conditions and interview advocates from across the community. In this episode, Colby speaks with our President Taylor Anne Burtz and Vice President Peter Zdziarski about their personal experiences with […]
Hi everyone, and happy holidays! With cyber Monday upon us, here is a great and easy way to help donate funding for a cure for GT. Sign in to smile.amazon.com on your desktop or mobile phone. From your desktop, go to Your Account and select the option to Change your Charity. Or, from your […]
