Foundation News & Updates

Physical Activity and Glanzmann’s Thrombasthenia

April 22, 2024

Glanzmann’s Thrombasthenia is a rare bleeding disorder characterized by the inability of blood to clot correctly due to a deficiency in platelet function. While managing this condition requires careful attention to various factors, including bleeding episodes and cardiovascular health, integrating physical activity into one’s lifestyle can improve overall well-being. Understanding Glanzmann’s Thrombasthenia Glanzmann’s Thrombasthenia poses…

A group of red blood cells in a background indicative of Glanzmann's Thrombasthenia.

Goa boy’s rarest blood disorder may be identified as disability

October 26, 2022

PANAJI: Unexplained red and purple bruises began appearing on Jacob Fernandes’ (named changed) body when he was still a toddler. At age two, after several rounds of hospitals and laboratories, Jacob was diagnosed with the rarest of disorders, Glanzmann’s Thrombasthenia, which causes the patient to bleed easily, sometimes for days. Only 500 cases of Glanzmann’s…

A woman with Glanzmann's Thrombasthenia in a tan blazer smiles for the camera.

Mary M. Gooley Humanitarian of the Year: Esmeralda Vázquez

August 29, 2022

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…

Two pictures of a girl with Glanzmann's Thrombasthenia in a hospital bed and overalls.

Cheyenne McNeilly is battling Glanzmann’s Thrombasthenia

August 15, 2022

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 family posing in front of a field of plants with Glanzmann's Thrombasthenia.

About 60 people join Sauble fun for SickKids Sunday

August 9, 2022

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….

The haemcast logo representing Glanzmann's Thrombasthenia.

Same but different; the challenges faced by the GT community

July 21, 2022

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…

Glanzmann's Thrombasthenia logo on a white background.

Survey: Glanzmann’s 360 – helping to better understand the impact of GT

June 21, 2022

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…

A group of people posing for a photo in a lab.

The Lab in Charge of Curing Glanzmann’s Thrombasthenia

May 9, 2022

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…

A rare poster showcasing Glanzmann's Thrombasthenia across America.

Rare Across America

January 4, 2021

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…

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