PRO BONO: NGOs

A Healthy Legacy

Geoff Adams-Spink, Chairman of the European Dysmelia Reference Information Centre, discusses how EDRIC serves the needs of people with limb difference and how White & Case helped make it possible

What is dysmelia?

Dysmelia is a generic term that covers congenital limb difference, the absence or malformation of one or more limbs from birth. A host of conditions come under the generic label of dysmelia, and all of them are extremely rare.


What is the European Dysmelia Reference Information Centre?

EDRIC is a network of organizations that provides support for people affected by limb difference. We operate an online community for dysmelia sufferers and plan to establish a forum for experts in the condition. Since our launch in April of 2012 through the end of this year, we have had 17 organizations become members from 11 countries across Europe.


How many people are affected?

We have had to do educated guesswork because birth defect registers are not always kept from one country to another, but we estimate there are 30,000 people affected by congenital limb difference in the European Union. It is a tiny, tiny fraction of the population.


What is EDRIC’s mission?

We find that governments, service providers and corporations do not really take account of our needs because they tend to cater to bigger populations. We also find that the people with specialist knowledge do not talk to each other and they do not talk to us. EDRIC’s primary mission is to provide people with the most current and accurate information on their conditions. One way to do that is to create a huge network of the people who are affected and a network of all the experts so that the experts can talk to each other, the people affected can talk to each other and the two networks can talk to each other. So we end up with a win-win situation. We have been advised by the European Union that we have an extremely sound and interesting project that could be useful as a template for other rare disease organizations.


How did EDRIC come about?

I am affected. My disabilities are caused by a drug called thalidomide, which affected a number of people, principally in Europe but in other countries as well, in the late 1950s and early 1960s. Two of the significant populations of thalidomide-affected people are in Germany and the UK, but there is also a small but extremely effective group in Sweden. I was representing the UK Thalidomide Trust, which provides support to those affected by the drug in the UK, and we were in dialogue with our counterparts in Sweden. We recognized this lack of expert knowledge and this disconnect between all the different groups, and we felt that it was a transnational issue.

We first thought of catering only to our thalidomide populations, and then we realized we are a very finite group of people. So we decided to look at limb difference or limb malformation generically. I also think thalidomiders have been remarkable in their ingenuity, persistence and ability to solve problems. I think that, as a group of people born within five years of each other, we wanted to make sure that when we are no longer walking this earth, our “can-do” attitude and our problem-solving was passed on to future generations of people affected by similar limb difference.


What was the situation when you were introduced to White & Case?

We decided to register EDRIC as a nonprofit in Sweden because the regulatory environment there is much less onerous than it is in the UK to do things like register a charity.

Having registered EDRIC in Sweden, we then found ourselves, through nobody’s fault particularly, in a whole morass of legal paperwork with things that had not quite been done properly and accounts that had not been filed by the right date and all of that kind of thing. EDRIC was almost wrapped up in its own nightmare of red tape, and we were not able to function. Tensions between the individuals involved were running very high. Our bank account had been frozen by the bank because we did not have the right documents.

So we were almost moribund before we even started, and it was a chance meeting with a representative from White & Case that led to our introduction to Ian Forrester in your Brussels office. Ian said, “Ok, what is this organization about? What are you trying to achieve? What are the problems? I think we can help.”


How did White & Case help you?

White & Case was the midwife that was able to deliver the child kicking, screaming and shouting. I don’t think we would be where we are now without that intervention.

I think Ian directed us to Rolf Olofsson, a Swedish lawyer in your Brussels office at the time, both for his personal qualities as a mediator—as a very safe pair of hands—and as somebody who understood the sorts of legal problems we had managed to create unwittingly around ourselves. Rolf had a very meticulous approach. He managed to unpick everything, to almost take the whole machine to pieces, take out every part and inspect it, dust it, clean it, screw it back together in the right order and then said, “There you go, that is how it should work, and this is what we need to do.” For example, one of things that was never right was our statutes, and that was largely because they were directly translated from a copy of some Swedish statutes for another organization. Rolf looked at the statutes and said they were not fit for purpose and drafted a new set of statutes that allowed us to proceed. If we had not managed to get really, really crucial details like that right, we would not have been able to function.


What unique challenges do dysmelia sufferers face that EDRIC seeks to address?

Dysmelia sufferers wear out their bodies differently compared with the general population. For example, if they have one limb or one hand missing, they will overuse the other side of their body. They will wear out their hips in a certain way that is not normal, and their hips may not be the standard issue in the first place.

So you need really specialist knowledge. Thalidomiders too often go to their doctor or even a specialist, let’s say a cardiologist or an orthopaedic surgeon, and have that surgeon say, “I’m not really sure about this.” That is really disconcerting.

One of the really crucial things we are missing is access to expert knowledge around our conditions. It is not just medical. It can be things like how to design a work station that is ergonomically suitable for people with upper limb disabilities like mine, so that they do not end up causing themselves a back injury like I did when I was in my mid-30s. It could be knowing which car models are best adapted for foot steering. There are so many different areas of expertise where people affected by dysmelia can come together and say, “We have already solved that problem. Here’s the solution. Here are five people who are already making it work for them. Why don’t you have a chat with them and see if it will be suitable for you?”


What programs have you put in place so far?

We spent most of 2012 launching our online community for dysmelia sufferers, called DysNet. It has taken off quickly, in large part because of the prevalence of social media. More than 300 people have liked our Facebook page, more than 700 people follow us on Twitter and our RareConnect forum has more than 60 registered users.

We are also a part of RareConnect, a collection of 32 online communities that cover different types of rare conditions, including dysmelia. RareConnect is hosted by two umbrella bodies for rare disease, NORD in North America and EURORDIS in Europe. The unique thing about RareConnect is that it is in the five languages of the European Union and offers many sophisticated and quick translation services. RareConnect is a significant start toward encouraging dialogue among speakers of different languages, and we are really excited to be a part of that.


What are your plans for the future?

Our next major piece of work is to build a forum for the experts who serve the dysmelic and limb difference community. We are planning a major international conference for specialists in 2014 that will serve as a platform for launching our forum. We also want to distil their knowledge in one searchable, multilingual knowledge repository, so that those affected can search for a procedure or condition and see things like scans from previous surgical interventions, papers written by professors, the names of clinics where these kind of procedures are performed and more.

It is probably going to take us five years to get to where we want to be, and it is going to take quite a lot of money as well, but once it is up and running we think it will be self-sustaining through the commercial support of companies interested in this area.

My vision for EDRIC is that most of the 30,000 or so individuals in the European Union affected by dysmelia would be members of DysNet; most of them would belong to an organization in their territory that is a member of EDRIC, and most would know that if they need to find some gizmo for opening their car door or washing their back or whatever, EDRIC and DysNet are the “go to” places for limb difference.
Adams-Spink

Geoff Adams-Spink
Chairman, EDRIC


 

“Information is power. To be an expert on your own condition and to have access to expert knowledge puts you in a much better and safer place as someone living with an extremely rare condition like dysmelia.”
Geoff Adams-Spink
Chairman, EDRIC

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