Atlantic Research Group’s Senior Vice-President of Business Development Mike Baker and Vice-President of Operations Erin Farris attended the 2020 Global Genes Live conference. The Patient Advocacy “(un)Summit” held virtually between September 15-25 brought together patients, advocacy groups, researchers, and other key stakeholders, all dedicated to finding answers to rare diseases.
Having attended many diverse sessions and events over a ten-day period, both Mike and Erin came away with many important takeaways. Each of them specifically talked about how they were inspired by the patient stories, and would take that energy and use it to continue forward in rare disease clinical trials.
Mike stated: “The conference has done a fantastic job discussing the importance of patient advocacy groups. The advocates are such an integral part–serving as the patient’s voice and caregiver. We are incredibly grateful for what they do.”
He went on to talk about the impact of rare diseases on families in 2020: “Being a part of the Global Genes Unsummit this week was very inspiring to hear about family resiliency and continuity of care, specifically in this Covid-19 world we are living in.”
Erin, for her part, echoed the uplifting tone of families at the conference, saying, “The Global Genes sessions were all inspiring because the focus was on the patient and family journey. Families impacted by a rare disease have hope that one day there will be a cure, but in order to do so they need to raise awareness and locate others who are also living with the same disease so that research can be done.”
Erin then elaborated on the research element: “Rare disease patients and families want to connect with those doing clinical research. It was noted that the use of master protocols would make conducting clinical trials leaner and faster, as well as the use of telehealth and remote monitoring technologies.”
She also was struck by the mental toll rare diseases take on patients and caregivers, explaining: “Rarely is mental health taken into consideration but it must be a priority for the patient and family impacted by rare diseases. Interestingly enough, advocacy groups end up being their coping mechanism because that’s where they find their community, sense of belonging, and second family.”
Erin’s final takeaway involved the idea of “inchstones.” She noted: “I love ‘inchstones’ as opposed to milestones because it’s so important to celebrate every advancement regardless of its size.”