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Rare Disease Day – why it's important to show your stripes


Rare Disease Day – why it’s important to show your stripes
Nucleus Global s EU Strategy Director, Amanda Henkel, writes about the importance of continuing to raise awareness of rare diseases
Rare Disease Day (https://www.rarediseaseday.org/) on 28 February is intended to raise awareness among policymakers and the public about rare diseases and their impact on the lives of patients and their families. If you’re active on social media, you can’t have failed to notice the splashes of pink, blue and green accompanying posts of the annual event. In the US, the zebra is the official symbol of rare diseases (due to the uniqueness of the black and white stripes) and the National Organization for Rare Disorders (NORD) are using the hashtag ‘Show Your Stripes’ to promote Rare Disease Day – but what does it mean, and why should we get involved? ....

Frits Van Rhee , David Fajgenbaum , Amanda Henkel , Castleman Disease Collaborative Network , National Organization For Rare Disorders , European Organisation , European Joint Programme On Rare Diseases , European Commission For Public Health , Disease Day , National Organization , Rare Disorders , Show Your Stripe , Rare Disease Day , European Commission , Public Health , Global Genes Project , European Organisation For Rare Diseases , European Joint Programme , Rare Diseases , Cell Reports Medicine , ஃப்ரிட்ஸ் வேன் ரீ , அமண்டா கோழி , கோட்டைக்காரன் நோய் கூட்டு வலைப்பின்னல் , தேசிய ஆர்கநைஸேஶந் க்கு ரேர் கோளாறுகள் , ஐரோப்பிய ஆர்கநைஸேஶந் , ஐரோப்பிய கூட்டு ப்ரோக்ராம் ஆன் ரேர் நோய்கள் ,