News

Foundation News & Updates

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…

Rare Artist Contest

August 7, 2020

Two of our GT patients have entered the 2020 Rare Artist Contest and need your votes for a chance to go to Rare Disease Week in Washington DC! Learn More About RareArtist.org Vote for Peter’s Art Vote for Cathy’s Art  

Formal Statement Regarding Outside Organizations

July 28, 2020

The Glanzmann’s Research Foundation (GRF), a 501(c)(3) nonprofit corporation, has a mission to increase awareness of Glanzmann’s Thrombasthenia, provide a network of support for families navigating a Glanzmann’s Thrombasthenia diagnosis, and to raise funds for a cure. We would like to formally address the increase in conferences, events, and programs that are being marketed towards…