Michela took part in an interview in which he was asked about his role within the network and his expectations. Below is a transcript of the interview which has previously featured in the EURO-NMD monthly newsletter .
a. Tell us a little bit about yourself
I have always been a curious person with a proactive personality and predisposed to exploration and discovery. I have a background in cross-cultural mediation and formal and non-formal education, so I’ve always enjoyed engaging in cross-border collaboration opportunities aimed at facilitating knowledge sharing and mutual learning.
The day I received the diagnosis of GNE Myopathy, a rare adult onset muscle disease, I started an endless online search. Three weeks later I got on the plane for the GNEM Natural History Study and wondered: “What if I did not speak English and needed more accessible information, what if I was not ready or in the position to take action for my disease, what if I wanted to help other patients and contribute to change”.
Unexpected or uncertain events have in fact always resulted in a sense of wonder and a desire to explore opportunities such as the EURORDIS initiatives and Summer and Winter Schools which contributed to shape my role as patient representative.
Getting actively involved for the GNEM and rare disease community came as a natural process, and my learning experience has now grown into a mutual learning process, a joint effort and a shared need to work together. I am involved in different working groups centred around patient engagement in research and decision-making, and currently participating in the EUPATI training course. My discovery process continues every day and keeps empowering me to take collaborative actions for real change in care and treatment for rare diseases.
b. What is your role in EURO-NMD?
I closely work with the other patient representatives and the network to fully integrate patient voice and equal partnership in decision making, guarantee diversity of patients is always taken into account, and representativeness of the broad patient community is ensured.
I help to identify and develop opportunities where patients can gain, use and transfer knowledge, but also feel integrated and act as full partners in research development and decision making. I further help to identify gaps and barriers to capturing patient needs and embracing patient centricity in the healthcare ecosystem.
c. What are your expectations of the Network?
I believe EURO-NMD and patients need to engage in collaborative actions to successfully identify a shared vision and support concrete steps for tangible change at European, national and local level. I expect to see engagement of patients in the network decision-making processes, clinical guidelines development and in the promotion of interdisciplinary care and transversal clinical research.
I feel we need to work on a multi-stakeholder engagement plan, communication and outreach, but also training and education for patients, researchers, present and future healthcare practitioners in order to consolidate knowledge and expertise in regional areas, while establishing an inclusive, global and coordinated care and disease co-management approach which takes into consideration the diversity of needs of all patients with neuromuscular diseases.