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Newsletter November 2019

Dear ESCIF Colleagues
Since the last newsletter, the ESCIF executive board started to work with the new board members. ESCIF is still in a change process but we are convinced that we have an effective team to shape the future of ESCIF. One thing that we feel is important, is to keep the same high level of professionalism at our congress. And we are on the right track! We are very proud to announce the opening of the registration to the 15th ESCIF Congress in Nottwil about the UN Convention on the Rights of Persons with Disabilities.

ESCIF Congress in Nottwil from 6th to 8th May 2020
For the third time, the ESCIF Congress will take place in Nottwil (Switzerland). Delegates of member countries, visitors, national and international researchers are going to meet in order to discuss the UN Convention on the Rights of Persons with Disabilities.
The congress will be focusing on the implementation of the UN convention across Europe, the role of the Government and on shadow reports written and supported by disability organizations. Furthermore, specific examples of problems concerning the implementation of the Convention will be presented. Finally, the program will be completed by a workshop where the delegates can analyze their country through a specific topic of the convention. We are very proud to have high ranking national and international speakers and are looking forward to fruitful discussions in Nottwil.
Please register on the following website:

Elections to the Executive

As proposed by the board last year, we would like to extend the board with one more seat, at the next assembly of delegates in Nottwil. If you need any information about the obligations of the Executive, you can mail the new secretary, Albert Marti, at and you can read the statutes on

Call for member’s input
We would like to share the member's input at the congress in Nottwil, so please let us know if you and your organization have something interesting to share. Member’s Input can be sent to us as a presentation of your organization’s interesting project, event, debate; past, ongoing or coming issue. You can choose the form of the member's input. It can be a 10 minutes oral session or a poster.
Please send your member’s input until May 11th 2020 to
Ambassador program
ESCIF will now continue the Ambassador program. You maybe remember: the purpose of this program is to improve communication within ESCIF. We are looking forward to the possibility of closer contact with all the member organizations.
The new executive board will contact all of the member organizations before the next congress in Nottwil. We want to hear about your strategy, risk/trends and many more things of your interest. We also want to hear about your thoughts, ideas and your need for ESCIF. The persons we would like to talk to about these matters are preferably the President, the CEO and the ESCIF delegate for your organization. The language used will have to be English.
As the president of ESCIF, I have attended for the first time the NoSCoS Congress 2019 that took place in Copenhagen, Denmark. It was a very good experience that showed me the importance of attending to these congresses in order to connect with other consumer organizations and networks.
The program from NoSCoS was very interesting with topics of high relevance. There were keynote presentations on pain, spasms, cannabis, exoskeletons, aging challenges, as well as many other topics.
The Danish organization RYK held an honorary workshop for Jane Horsewell, about living and aging with SCI. I was invited to the workshop where Rebecca Harvey, Jane Horsewell's daughter, also was present. This was a good occasion to hand over the certificate of Jane's Honorary membership of ESCIF to Rebecca and to express Jane's importance towards ESCIF and people living with SCI in general.

From left: RYK Chairman Helle Smith (Dk), Mikkel Bundgaard (RYK- Dk), Rebecca Harvey, Viggo Rasmussen (RYK - Dk, moderator) Stefan Opresnik Jorlev (ESCIF), Markku Poukela (Aksonry – Fin), Erik Berndtsson (Spinalis – Se) and Susanne Døssing (Nurse – Dk)

RYK plans to make the “Jane Horswell Workshop” a recurring workshop on the NoSCoS Congress. This decision is of course supported by ESCIF. Indeed, this workshop would enable consumers and professionals to get closer so that all of us could work for the same goals!

As a representative of the ESCIF board, I will also attend the yearly ISCoS Congress that will take place in Nice, France during November. In that regard, I have been in contact with other international SCI consumer organizations. We have agreed to meet and talk about how to create closer and stronger ties and how to collaborate better. It is going to be an interesting congress; which I will let you know more about in the next newsletter.

Best regards
Stefan Opresnik Jorlev
ESCIF President

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