GA 2017

Euro-HSP Annual Meeting 2017

June 17, 2017 - 09:00 to 13:00

Place: Hotel Catalunya, Via Catalogna 22, Alghero (SS) Italy



GA 2017 Participants    

3rd row:  Peter (NL), Rita (I), Morten (DK)
2nd row:  Jean and Laurance (F), Martin and Cornelia (CH), Hermien (NL), Marina (I), Professor Sotgio (I), Rob (I), Tommaso (I) and Anna Maria (I)
1st row:   Pasquale (I), Ingerid (N), Dorthe (DK), Edoardo (I), Giorgia (I), Lori (AU) and Salvatore (I)

Missing in the photo: Professor Casali, Dottor Panza, Dottoressa Ulgheri and Margherita (Edoardo´s sister and photographer)



Agenda PP

 1.     Welcome and introductions                                                                 
  Reports from the national associations
2. Presentations
  • Professor Stefano Sotgiu "Sardinia and HSP" see here
  • Professor Carlo Casali: "Daisy" Italian HSP database see here
3. Coffee break
4. Presentations
  • Dottor Panza: Mutation in gene ALDH18A1 causing SPG9A here
  • Lori Renna Linton: Potato Pants event see here
  • Hermien Remmelink: Eurordis Summer School 2017 see here
5. Lunch

 Video in Italian

GA 2017Poster

Euro-HSP GA 2017

June 17, 2017 - 14:30 to 18:00

Place: Hotel Catalunya, Via Catalogna 22, Alghero (SS) Italy


Agenda PP

1.    Welcome                                                                                                                                      
  Everyone re-introduced themselves. Two of the three doctors from the morning sessión stayed for the beginning of the GA.

Annual report from the president (Dorthe)

  • Activity report 2016-2017 Read here
3. Annual report from the treasurer (Martin)
4. Report from our scientific board (Jean) See PP here
  We agreed to work more with Scientific bodies to be patient representatives on their respective panels, and not simply observers, for example SPATAX and JPND, and hopefully other projects as they come up (NeurOmics, ENMC - European Neuro Muscular Centre). Jean also agreed that we should look at and agree to (or not) a shortened version of involvement in the JPND project by 25 June (online). Action: Jean to spearhead both campaigns. He will ask for help as needed.

5. Reports from conferences.
  • EURORDIS membership meeting in Budapest, Hungary (Dorthe) See report here
6. Elections: Board of Directors
  • President (2 years)
    Marina accepted the nomination on condition of revisiting it after one year (next year's GA) because she expects the following year to be very busy. Everyone agreed to vote and revise at GA 2018. Marina was voted unanimously as President.
  • Vice-President (1 year)
    Hermien accepted the nomination and was voted in unanimously.
  • Treasurer (2 years)
    Martin accepted the nomination for two more years and was voted in unanimously.
  • Secretary (1 year)
    Ingerid was nominated and reluctantly accepted the nomination. She would prefer to do it with help, especially for her English. Marina suggested the help could come from Lori, not a member, from Austria. Rob to propose changing the By-laws in order to allow individuals to be on the Board. Vote to take place online when the proposal is ready, if necessary. In the meantime, Ingerid is voted in unanimously with the understanding that Lori will help out once she can.
  • Scientific advisor (2 years)
    Jean accepted re-nomination and was voted in unanimously for two more years. 

  • The vacant seat on the Board (2 years) 
    Dorthe's idea is to nominate Morten in January 2018 from her organization as Danish delegato to Euro-HSP Board,  At the GA 2018 Morten, Adam (UK) and Eduardo (Spain) may run for the vacant seat(s).
  • Webmaster
    Dorthe graciously accepted to continue doing the website work for at least one more year, but if anyone is interested in doing it, she would gladly train them so they can take over. We also talked a little on perhaps using FB more and be more active on the website maybe put on videos etc.
7.  Strategic action plans for the future
  • The importance of a realistic action plan
    Rob presented on Euro-HSP making an Action Plan that needs to be adhered to. See PP here
  • HSP Best Practices Manual

    Jean had sent around a proposal for a Best Practices Manual that only Peter had time to look at, and thought it was difficult.

    Hermien beleives she can turn out a first draft of Best Practices in two months. Action: Following Rob's Action Plan , she will work closely with Jean to move forward. Rob suggested monthly or at least trimester-ly teleconferences to keep everyone informed. This will also be able to be used as a fundraising tool for Euro-HSP once it is available. the coordinator is the president, who will make sure times are respected, etc. Lori offered to see if some of the "best practices" can be turned into the videos which may be more appetizing to some public.
  • GA and annual meeting 2018
    Next GA could be in Vienna. As EURORDIS is in Vienna 10-12 May 2018, we could combine the two events. Action: Lori to investigate.
  • New members: enlargement of the Federation to all European countries.
    Action: Dorthe will continue working on contacting potential members.
    We need to get UK and Spain more involved, as well as continue to look at Germany.
  • Funding: Pharma companies, Eurordis Grant, ?
    Action: Rob to compile the drugs available and the companies that make them and reintroduce Euro-HSP to them, under the guide of Morten. We must consider the products we can offer (Best practices, Data Sharing, etc)

The use of logos. Questions from Frank (Australia) about using the International logo. Action: Dorthe to report back to Frank).

9. Other business
  • Contact mail addresses e.g. are only contact mail addresses.
    If you receive mails from these addresses they are spam
10. Evaluation of GA and Annual meeting
  • Action: Surveymonkey available here