The second edition Telomere Biology Disorders: Diagnosis and Management Guidelines have been officially published. This is a comprehensive reference manual for patients, physicians, and researchers. These updated guidelines are the result of a multi-disciplinary international collaboration between clinicians and scientists united by the goal of improving the lives of people with Telomere Biology Disorders and […]
To help raise awareness of rare disease dyskeratosis congenita, and other telomere biology disorders caused by short telomeres, Jeni has shared her experience this Rare Disease Day. My name is Jeni Colter. At fifty years old, I have many things; A wonderful husband, two great kids, a house, two dogs and very short telomeres. Very, […]
This guest blog, from Sharon Lee, Executive Director at CPFF, is to mark Pulmonary Fibrosis Awareness Month this September. Find out what the organization is doing to raise awareness and how you can show your support. Throughout the month of September, the Canadian Pulmonary Fibrosis Foundation (CPFF) is sharing the stories of those living with […]
Ahead of Pulmonary Fibrosis Awareness Month, which is marked every September, Laura Devitt, Director, Programs at Pulmonary Fibrosis Foundation kindly shared the below information about getting involved. Every September, those who have been impacted by pulmonary fibrosis (PF) unite for Pulmonary Fibrosis Awareness Month (PFAM). Melissa King, a PFF Ambassador from New York, has participated in […]
To help raise awareness of rare disease dyskeratosis congenita, Julian’s mom Mayra has kindly shared his journey through 4 stem cell transplants this Rare Disease Day. At the age of 3, our son was diagnosed with a rare genetic disorder called, dyskeratosis congenita. We were really fortunate our search led us to the Jimmy Fund […]
To mark Telomere Biology Disorder Month (TBD Month) this November, Brian is kindly sharing his journey of being diagnosed with dyskeratosis congenita, liver failure and undergoing a liver transplant. My journey with dyskeratosis congenita (DC) started in September 2016 when I was first diagnosed. I had become pretty sick in a short period of time, […]
This Telomere Biology Disorder Awareness Month (TBD Month) we have a guest blog from Colleen, Team Telomere President & Chair of Legacy. Colleen is kindly sharing her families’ story from unexpected diagnosis, to health care journeys, to the strength she has found in the Team Telomere community. If you would’ve told me 15 years ago […]
This Pulmonary Fibrosis Awareness Month we have a guest blog from Heather, who is kindly sharing her experience with IPF to help raise awareness. IPF diagnosis I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) in February, 2013. I was 43 years old. My father and grandfather both passed from IPF so I knew there was […]
This guest blog from the Canadian Pulmonary Fibrosis Foundation marks Pulmonary Fibrosis Awareness Month and explains the events and activities they have coordinated for September. Register now for fun and informative activities during Pulmonary Fibrosis Awareness Month Despite the pandemic, Pulmonary Fibrosis Awareness Month this September may be the best ever from the Canadian Pulmonary […]
In support of the Pulmonary Fibrosis Awareness Month we are pleased to share a guest blog from the Pulmonary Fibrosis Foundation explaining the theme for this year’s campaign, and how to get involved. September marks Pulmonary Fibrosis Awareness Month (PFAM), presented by the Pulmonary Fibrosis Foundation (PFF). This annual awareness campaign spreads the word about pulmonary fibrosis […]