The EDRIC meeting in Sweden: a quantum leap forward
After last weekend's Members' meeting in Malmö, the chairman of EDRIC, Geoff Adams-Spink offers his reflections on its success and the way forward for the members and for DysNet
When we launched EDRIC's online arm, DysNet, earlier this year and started our drive for limb difference groups from across Europe to join us under our umbrella, we had in our minds that we would all come together at a members' meeting to cement our new relationships.
Little did we anticipate that when our event was held, in Malmö, Sweden, this past weekend, that we would have almost 50 participants from 16 limb difference organisations from 12 different countries, as well as our own board members.
The meeting was a resounding success with a range of presentations ranging from using social media and online safety, to managing the health of a rare disease organisation, to hearing case studies of how groups from across Europe operate.
For me, as chairman of EDRIC, the meeting was a huge step change and we have made a quantum leap forward in moving towards a brighter future for people with limb differences across the world. In this one event, we have brought together people of different nations, who have had different experiences and different conditions but who all have one thing in common: the need to feel that they are not alone or isolated with a rare condition.
My strongest impression, besides events in the meeting room, was in the conversations and social connections that people made in the breaks, while sharing a drink in the bar or over dinner.
Participants who had previously been strangers, mixed with each other, myself and our EDRIC board members in such an easy way, discussing what they had learned during the day and swapping experiences.
This interaction was what brought home to me that what we have created in EDRIC is an increasingly influential voice with a genuine and strong member base. This is important, as it will help us to be heard and listened to as we try to improve accessibility, facilities and healthcare for people who are missing limbs, whether congenitally or acquired through trauma or illness.
We have only just begun - our next steps are to organise an experts' conference to enable medical professionals who specialise in treatment and services for people with limb-loss to come together, exchange expertise and knowledge and to meet with our members.
In this way, we can learn from each other, which can only improve understanding of how people with limb differences want to be treated and what help they need to live happy, productive and healthy lives.
Our weekend in Malmö was inspirational to be a part of. I would like to thank everyone who made the effort to attend - and believe me, when you have a physical disability this is often not an easy task.
We are open to applications from Limb Difference organisations from across the world for full membership and for support groups that are not registered as legal entities, as associate members. What are you waiting for?
Tags: limb difference amputee dysmelia rare diseases disability News Article