News

Foundation News & Updates

Board Officers with Dr. Wilcox

Board Officers Visit 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…

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…

20 Years of Connections: The Glanzmann’s Research Foundation

December 4, 2020

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…

Help us on Amazon Smile Today!

November 30, 2020

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…

My son has a life-threatening condition – but my best friend has the same one, which gives me hope

October 25, 2020

When her son was born with an extremely rare genetic condition, Annette Kellow 37, was devastated. But a strange coincidence is helping her through. I was chatting to my best friend, Irene, at our favorite nail salon when the technician accidentally nicked her skin, and her finger started to bleed. ‘I’ve paid to bleed,’ joked…

Dedicated to Finding a Cure

October 15, 2020

Patient Worthy has recently begun a partnership with the Glanzmann’s Research Foundation, a nonprofit patient organization dedicated to spreading awareness about Glanzmann’s thrombasthenia and finding a cure. We spoke with Vice President Peter Zdziarski about his involvement with the organization and how the foundation got to be where it is today. Peter is a patient…

UC Davis veterinarian discovers rare blood disorder in cat

September 27, 2020

Miao Miao, a four-year-old male domestic shorthair cat, was brought to the University of California, Davis veterinary hospital with persistent nosebleeds. Based on previous medical issues, his owners were aware that he had some variation of a blood platelet disorder, but the exact makeup of that was never discovered. Specialists with UC Davis’ internal medicine…

Disease Burden in Patients with Glanzmann Thrombasthenia: Perspectives from the Glanzmann Thrombasthenia Patient/Caregiver Questionnaire

September 25, 2020

Introduction: Glanzmann thrombasthenia (GT) is a rare bleeding disorder (~1:1,000,000) caused by impaired function of platelet glycoprotein IIb/IIIa responsible for aggregation. This novel survey was designed to identify the burden of GT through better understanding of the management of the disorder and its psychosocial impact on patients and caregivers. Methods: Participants were recruited via a…

“I tattooed the same bruises as my son.”

September 9, 2020

Little John Mary suffers from a rare hereditary disease: his platelets are not able to stop bleeding. Siniscola (Nuoro) – A father’s love for his son is all in a simple photo: in the left pane, there are the legs of Giovanni Maria, a child who will turn 4 in October, while those portrayed on…