Foundation News & Updates

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…

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…

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…

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…