For the second year running, the ECTS annual conference hosted an event to raise money for a local charity. As the meeting was hosted in Valencia, this year we collected funds for the Spanish Camurati-Engelmann Patients Association, a severe genetic skeletal condition (details at this link). We held a Beach Volley tournament at Malvarosa beach with a total of 8 teams taking part. Many others also came to the beach to support friends and colleagues in what was a fun and relaxing evening. It was an opportunity not only to raise money for a good cause but also to interact and network with colleagues in an entirely different setting. The total amount raised was 1,455 €, and this modest sum will allow the Spanish Camurati-Engelmann Patients Association in their outreach and education activities.
“I am very thankful to ECTS members and delegates.” Said Javier Gomez Melgar, President of the Camurati-Engelmann Patients Association España. “The funds will help the organization to finance some of our awareness and patient-assistance activities. But mostly, the new ECTS initiative to support Rare Bone Diseases Patient Organisations to connect and share best practices, will be very beneficial to Camurati Spain. Up till now, we have been working in a very isolated way and being part of a larger community will help us to better serve our members and research in the field”.
Patient and patient advocates are increasingly involved in decision-making in healthcare and the setting of the research agenda. ECTS in its role of fostering research, has supported the creation of a multi-stakeholder initiative where the research, medical and patient organisation community could meet, learn from each other and discuss key topics in the field.
The initiative kicked off on 25 May during a meeting where representatives from representatives from ECTS, Industry and Patients Organisations could review common challenges and opportunities and set the framework for a European Network for Rare Bone Diseases Patient Groups. The rare bone disorders represented by the Patient Organisations were Osteogenesis Imperfecta (OIFE and AHUCE), Hypophosphatasia (HPP Deutschland), Fibrous Ossificans Progressiva (AEFOP), X-linked hypophosphatemia (XLH UK, AERHyO) and Camurati-Engelmann Disease (Camurati-Engelmann España).
The results of this first meeting will be available soon and regular activities will be planned through out the year, including a new face-to-face meeting in Budapest, in the context of ECTS 2019 (10-14 May 2019).