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
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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
Beyond academic publishing, Enago can support organizations in developing clear, impactful communication materials. This might include press releases, social media content, or informational brochures that… Continue reading Enago Life Sciences
My name is Jessa, I’m 18, and I have multiple rare diseases with unknown genetic causes. One is Ehlers-Danlos Syndrome (EDS), a connective tissue disorder… Continue reading An Interesting Case
New Daily Persistent Headache has been the defining factor of my life since the day it started on July 24, 2016. It’s very similar to… Continue reading (NDPH) Being 1 in 100,000
For World Rare Disease Day, we are leading a high-impact social media campaign to raise awareness, educate the public, and advocate for better support for… Continue reading Inculture Agency
Assist Support Services provides Supported Independent Living (SIL), Individualised Living Options (ILO), and community support services to empower individuals with disabilities. February 28th, we will… Continue reading Assist
I am a one woman band, rather than an organisation, though I am firmly supported by my husband who is my main carer. Last May… Continue reading Anneke Vliegen – Author