World Duchenne Organization is involved in Share4Rare, a platform to boost rare disease research and recently, a new and improved role was introduced to the platform for patient organisations (POs). To share this important update and engage with rare disease POs, there will be a virtual meeting on a webinar for Patient Organisations in Rare Disease Research on Tuesday June 16 at 4 pm. For registration click here.Topics to be discussed:
- How Share4Rare benefits POs through research projects of high scientific quality
- How to use S4R’s feature to safely collect and store data
- How to disseminate your research initiative using a global forum
- How networking and capacity building can benefit your PO and patients