In our continuing effort to learn the latest developments on rare diseases and form connections with others searching for solutions in this area, the Advocacy has participated in Findacure events. Findacure is a UK based charitable organisation that seeks to strengthen and unify the rare disease community, promote drug repurposing for rare diseases and provide patient group training. Findacure offers free workshops to rare disease patient groups to provide them with guidance in moving forward with their objectives.

This past year, the Advocacy’s Ginger Irvine and Annette Chase have respectively taken part in informative workshops on “Drug Repurposing for Rare Diseases” and “Fundraising for rare disease patient groups”. In addition, our Trustee Nancy Glynn spoke at the Findacure “Peer mentoring 2018 summer meet-up”. Nancy’s well-received topic was on “Training: Personal development as a leader of small patient group”. We look forward to a lasting and fruitful relationship with this important rare disease umbrella organisation.