June 28, 2021
Greece – We have only just begun: a year in retrospect
The Greek primary immunodeficiency patient organisation Galinos, was founded a little over a year ago, just before the beginning of the pandemic. The fact is that the situation at hand, although difficult, allowed us to find alternative methods of advocating, communicating, empowering and educating patients and their families.
We realised that during this extended period of social distancing, creating a sense of community was essential to ensure that people with primary immunodeficiencies (PID) do not feel isolated and alone. The first step in this undertaking was to develop a stronger more personalised support system and online presence through social media, YouTube and our website. Additionally, setting up a series of educational webinars on different topics with our medical board and other leading physicians in their perspective fields, has helped in disseminating essential information. So far, we have had three very successful webinars over the past few months.
Another short-term goal of ours, taking into consideration not only the problems raised by the pandemic but also the fact that our members are from all over Greece, was to set up frequent “afternoon coffee/tea” interpersonal teleconferences, allotting everyone the time to become better acquainted and feel part of a community from the comfort of their own home.
PID materials in Greek
Because it is important to have clear, concise and easily understandable material on PIDs in Greek readily available not only in Greece but globally, another huge endeavor of ours is to extend and solidify our online presence and reach more people with our website, making it easier to find through a search engine. We have created informational videos on PID in Greek through our YouTube channel as well as our page on Facebook.
We have been advocating, educating and empowering through our webinars, engaging with government bodies, pharmaceutical companies and medical equipment companies, but we aim to take it one step further, by creating additional educational materials, brochures, fliers and pamphlets so that the information is always at hand.
Cooperating with partners
Another important aspect of what we have been doing is cooperating with other patient organisations and stakeholders in order to convey information and leverage our common interest. One such campaign was with the Thalassemia Association in Greece, where we created a joint video on blood donations and plasma, something that is essential to both of us. We feel that these types of symbiotic relationships help further common goals.
Our activities had a clear peak during the month of April in observance of World PI Week.
As part of our Making a Difference—World PI Week, April 22-29, 2021 campaign, Galinos, organised a series of campaigns and events that were aimed at raising public awareness, educating, empowering and supporting patients and their families. Press releases to the media, an interview on a national tv channel discussing PIDs and their warning signs, as well as a very successful 5-hour web conference which focused on sharing knowledge and real-life experiences were the main focal points of the week.