Other content tagged: advocacy
RSV Policy and Advocacy Workshop in Munich
From 23 to 25 June 2023, parent and patient representatives from all over the world came together to exchange and learn about effective policy and advocacy activities and tools using the example of RSV in young children. It was a pleasure for EFCNI to host this workshop on policy and advocacy in the field of RSV in Munich from 23 to 25 June 2023. The three days were packed with practical exercises, interesting group discussions and workshops to help the…
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Current times ask for creative solutions! GLANCE Chair Committee has its first digital meeting
As the pandemic makes face to face meetings currently impossible, we were delighted to have the chance to e-meet the GLANCE Chair Committee digitally. “A global alliance, representing the stories and the voice of the parents was long overdue. We must include parents when we advocate for improvements in girls’, women’s and adolescents’ health.”, stated Chair Committee member Mary Kinney, Save the Children, US. EFCNI could…
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Canada’s Rare Disease Strategy – 5th Anniversary
Interview with Durhane Wong-Rieger, PhD, President & CEO, Canadian Organization for Rare Disorders and Chair, Rare Disease International Dr Wong-Rieger, what was the idea behind your strategy and what was the starting point? Before we, as the Canadian Organization for Rare Disorders, could bring people together to consider a national “rare disease strategy”, we had to answer the question, “what do rare diseases have in common?” What could we possibly offer patients…
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Putting prematurity on the agenda of the Brazilian Government
A guest article by Denise Suguitani, Executive Director of the Brazilian Parents of Preemies' Association Brazil is the 10th country in the world ranking of preterm birth. Since 2014 the nonprofit organisation 'Brazilian Parents of Preemies' Association', known as 'ONG Prematuridade.com' has been dedicating its work to address prematurity based on three pillars: raising awareness, prevention of preterm birth; permanent education to train health professionals, and advocating in the interests of families of preterm infants, acting in the area of…
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