Before February 2013, Sam was a normal, healthy kid. He was a little clumsy, but nothing that we were concerned about. One day in February,… Continue reading Sam vs VWM: Living with a rare, terminal disease
Results for "light up for rare"
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EURORDIS is delighted to announce the Rare Disease Day 2015 Ambassador: Sean Hepburn Ferrer. Born in Lucerne, Switzerland, Sean Hepburn Ferrer is the eldest son… Continue reading Meet the Rare Disease Day 2015 Ambassador: Sean Hepburn Ferrer
The Taiwan Foundation for Rare Disorders (TFRD) was established 19Â years ago. Its primary goal was to secure rare disease patients’ access to medical and proper… Continue reading TAIWAN FOUNDATION FOR RARE DISORDERS
The celebration of Rare Disease Day occurs at ICVS/University of Minho since 2021. Our aim is to disseminate knowledge and to raise awareness about rare… Continue reading ICVS – Life and Health Sciences Research Institute
Do you know the difference between equity and equality? Equality means promoting fairness by treating everyone equally regardless of need, whereas equity means promoting fairness… Continue reading Equity toolkit
Today, when a child is diagnosed with 4H Leukodystrophy, a rare genetic neurological disease, doctors tell their parents that there are no therapies available and,… Continue reading The Yaya Foundation for 4h Leukodystrophy
My son Emilio (my first born) was born on 6 July 2023. His little eyes didn’t open at all for the first few weeks of… Continue reading My special 1 in 50,000 baby
IDFA is a national not-for-profit and leading peak body offering education, advocacy and awareness for Australians living with primary or secondary immunodeficiencies. In conjunction with… Continue reading Immune Deficiencies Foundation Australia
Nerve Connection Foundation was established in 2021 to address a need for a significant uptick in funding for research into devastating, fatal neurodegenerative diseases. Motor… Continue reading Nerve Connection Foundation Limited