October
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The EDRIC meeting in Sweden: a quantum leap forward

Posted on Monday 1st October, 2012

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

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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. 

EDRIC meetingLittle 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

COMMENTS

Jen @ Born Just Right

Jen @ Born Just Right

Tuesday 30th May, 2017 @ 8:16 am
Congrats on this wonderful event. I hope I can help bring representation for limb differences in the United States some day soon. It's always powerful when you can bring communities together in person... Incredible things are ahead for EDRIC and DysNet I just know it!

Sam Gallop

Sam Gallop

Tuesday 30th May, 2017 @ 8:16 am
Warmest congratulations on your new vigorous and much needed international/national campaiging. I am sure that especially because you (we) all have direct experience of limb loss needs and rights EDRIC and DysNet will go from strength to strength.
As a double amputee since 1944 you have made my day!"

Gernot Stracke

Gernot Stracke

Tuesday 30th May, 2017 @ 8:16 am
Hello all together,

Albeit with a delay, I would like to congratulate you on this very successful first members meeting in Malmö. The event was excellently organized, make them interesting and, I consider all students with the desire for more active participation.
I am personally very happy about it, to have met such nice people from several European countries and hope that we can continue and intensify our relationship for the purposes of all people with limb difficencies.

Greetings from here to the Board of EDRIC and to all participants.

Gernot Stracke

Nigel Tarrant

Nigel Tarrant

Tuesday 30th May, 2017 @ 8:16 am
Through the meeting in Malmo EDRIC has already introduced members of Reach,the UK organisation for children with upper limb deficiency to a new group of friends in France. Thank you so much to the members of Asadea who came to our AGM in Portsmouth and we hope that this will be the start of a fruitful co-operation between our organisations .

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