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, Mark 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 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 […]
In 2005 Peter Lansdorp and Gary de Jong set out to address an unmet need, providing physicians with accurate and reproducible telomere length measurements for use in clinical practice. As we approach our 15th anniversary, we take a look back at the origins of RepeatDx (Repeat Diagnostics Inc.) and what we think makes us and […]
To mark Rare Disease Day, we have a guest blog from Mike who is kindly willing to share his experience with familial dyskeratosis congenita. Hello, my name is Mike and I have a rare disease. It is called Dyskeratosis Congenita (DC) and it runs in my family. My father and my uncle (his twin) had […]
Durhane Wong-Rieger, President & CEO of CORD (Canadian Organization for Rare Disorders), has kindly shared this guest blog explaining why this year is so important for CORD and how they will be getting involved with Rare Disease Day 2020. Rare Disease Day 2020 – A Significant Watershed Every four years, International Rare Disease Day falls […]