RDI and EURORDIS Webinar: The Fundamentals of International Advocacy for Rare Diseases
Sometimes we want to give a helping hand, but we are not sure where we should be focusing our efforts. To fight for patients and caregivers' rights, rare disease advocates must learn basic skills andA patient-turned researcher advocates for transparent science in rare disease research
Richard Rui Yang is a Hong Kong-based researcher affected by Bietti crystalline dystrophy (BCD), a rare retinal degeneration disease characterised by small sparkling crystalline deposits in theChallenging endings, hopeful beginnings
The last two years of the Covid pandemic have made everyone reflect on the flow of time, moreso those of us who are raising children with life-limiting and rare conditions. Time is precious to us7 tips to organise a successful global online training for your rare disease community
Organising a training on a global scale can seem daunting at first. But when done right, you have created a connected community and move forward with a joint strategy that can benefit all. Are youTry these 5 tips to strengthen your patient advocacy effort
The following steps will help you set the groundwork on which to build and maximise your chances of success. In the Share4Rare Toolkit for Patient Advocacy, we explain exactly how to do this practicePatient advocates: this toolkit should be on your holiday reading list
“The Share4Rare Toolkit for Patient Advocacy is a very well-designed toolkit that helped me a lot. It gave me the much-needed organisational support and ideas, and ways to innovate my practice. MainlyInterview to Verónica Zofío — Affected by lymphangioleiomyomatosis
Verónica Zofío is the marketing manager of an environmental laboratory. She is 40 years old and was born and raised in La Vall d'Uixó, Castellón (Spain). Six years ago she had a pneumothoraxShare4Rare End Event: setting the path for next generation data sharing in rare diseases
Rare disease patients and their families have the right to be part of a community, wherever they are in the world. It is equally important that research that is performed will benefit the patientMeeting the partners — The Synergist
They say it takes a village, and the rare diseases community is just that - a tight knit group with a sense of camaraderie and fellowship. This is the power of Share4Rare - creating a platform whereMeeting the partners — Sant Joan de Déu Research Foundation
“Starting in 2015, we have a dedicated department to include patients and caregivers in research projects”, explains Begonya Nafria, the hospital’s Patient Engagement in Research Coordinator. “ThisMeeting the partners — World Duchenne Organization
The World Duchenne Organization (WDO) is one of the two patient organisations joining Share4Rare as project partner. Dimitrios Athanasiou, WDO board member and father of a boy with Duchenne, did notWednesday is Share4Rare User Day
In 2020 hundreds of people from 50 countries were connected in the Share4Rare community. The pandemic has forced us to include technology in our day to day life and you may have some doubts about the