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 and
4th Share4Rare Call4Projects to drive rare disease patient-driven research studies
Collaborative research into rare diseases stands as one of the cornerstones of Share4Rare. Year after year, we endeavour to foster the development of research projects in this field that focus on the
Ken To — Caregiver in a family impacted by Huntington’s disease
As Ken To states, being part of a family affected by Huntington's disease is challenging. The disease may manifest at any stage of adulthood and, currently, it does not have a cure. “ Growing up in a
Nerea González — Affected by a mitochondrial disease and a member of AEPMI
Nerea González defines herself as a " Mito Warrior," a fighter who refuses to surrender to adversity. And she knows a lot about adversity. One of the conditions she suffers from is Coenzyme Q10
An educational guide to building your online patient registry
One of the main challenges when researching rare diseases is there is not enough available information about how the condition affects patients. This is mainly because there are not enough patients
A 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 the
Challenging 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 us
7 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 you
Try 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 practice
Patient 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
Interview 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 pneumothorax
Share4Rare 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 patient