Minutes FESCA aisbl AGM 2013, Porto
Hotel HF Tuela, Porto, Portugal
Saturday, 6th April 2013, 9:00am
Participants :
Belgium:Guy Dagnies (APSB.asbl)
Croatia:Jadranka Brozd, Sanja Roskar
Cyprus:Despo Charalambous
Denmark: Annelise Roennow, Kent Krarup Madsen, Zandra Willumsen
Finland: Marjo Mäkelä, Riikka Kauramäki
Germany: Karlheinz Schönemann
Hungary: Beata Garay-Toth
Ireland: Ann Tyrrell Kennedy
Italy: GraziaTassini and Edda Mancini (GILS), Gabriela Verzi (AILS)
Netherlands: Linda Schraven
Norway:Mariken Prag
Portugal: Catarina Leite, Angela Maia
Spain: Alexandra Portales
Switzerland:Nadine Paciotti
Un.Kingdom:Elizabeth Bevins (RSA), Mike Rich (SS)
Excused:
Belgium : Catherine Van den Bosch, gave voting rights to Guy
France : Dominique Godard
Italy:ASSMAF and APMAR, represented by AILS
Sweden: Johanna Berglind de Backer
Poland : Beata Lecinski
Number of members and votes present means AGM attained quorum.
Recorded by:Approved by:
Alexandra PortalesAnn Tyrrell Kennedy
1.Welcome and Excuses
Ann T.K. opens the meeting thanking Angela Maia and Catarina Leite from the Portuguese Association for hosting and making arrangements.
She introduces and welcomes the new members and new country representatives:
-Kent K.M. and Zandra W. from Denmark, who are accompanying Annelise
-Marjo M. and Riikka K. from Finland, new member who joined FESCA in 2012
-Mariken P. from Norway, new member who joined FESCA in 2012
-Elizabeth B. from United Kingdom (RSA)
-Mike Rich from United Kingdom (SS)
-Edda M. from Italy (GILS), who is accompanying Grazia
She also apologies for those representatives unable to attend: Catherine Van den Bosch (whose vote was delegated to Guy and job supported by AlexandraP.), Joep Welling (represented by Linda S.), Dominique Godard, Kim Fligelstone (ill and represented by Mike R.), Johanna Berglind (who had travelled to Porto but was ill) and Beata Lecinska.
Ann asks representatives to arrange replacement representative attending and delegated vote sending in case of official representative not being able to attend the AGM (this time France and Poland), so all the points of view can be taken into consideration.
Beata G.T. thanks all the representatives for the efforts to arrange their trip to Porto. It has been quite difficult, long and tiring for most of representatives, but the nice city and hotel are worth all our efforts. She explains that easiest access from most countries will have to be taken into consideration when choosing cities for next AGM.
Ann T.K. also apologizes for the changes in the date of the meeting.
2.Minutes from last meeting
The Council approves the minutes from the last meeting held in Madrid 2012, and Ann T.K. signs them as president of FESCA aisbl.
3.Accounts 2012
Despo C. presents the financial situation for the year 2012:
Expenditure: 30.508,85 € (Includes support to members for WSD, bank charges, expenses for meetings, expenses for presentations/seminars, printing, web page, EURORDIS membership fee, promotion and gifts, modification statues)
Income:25.977,82 € (Includes annual members subscriptions, support from Third Parties, support from Actelion for WSD, interests received)
Negative result 4.531,03 €
FESCA aisbl balance at 31/12/2012 : 52.181,70 €
Mike R. asks about the high difference of Third Parties incomes between 2011 and 2012. Beata G.T. explains that the difference is due to the grants received during 2011 for the World Congress 2012.
Grazia T. asks about the possibility to receive by email the accounts before the meeting in order to examine them. Ann T.K. explains that sending this kind of documents by email is not secure and therefore not recommended. To resolve this point, Liz B. suggests that questions about the accounts could be sent to Despo after the meeting.
All representatives agree and the Council approves the accounts.
Note: Later and during the discussion of item 7 about creation of a dropbox account, the decision is taken to share accounts this way before the meeting.
4.Budget for 2013
Beata G.T. presents the budget for 2013, which is approved by the Council.
Expected expenditures: 38.090 € (Includes Porto-AGM, support to members for WSD, expenditures for III WSC, EULAR 2013, website domain, EURORDIS fee, bank charges, secretariat expenses, DeSScipher )
Expected Incomes:88.020 € (Includes annual members’ subscriptions, grants and support from Third Parties, DeSScipher incomes). Parts of them are already confirmed.
5.Membership, Register, Communications
5.1.Contactdetailsupdating
Alexandra P. explains the importance of maintaining updated versions of the register and contact data of all the representatives, to make sure that all of them receive all the information, and to make easier the communication among representatives when needed.
For that, a new excel file has been designed, including 4 columns to be filled in by each member: official email address of the association, email of the official international representative (these will receive all the emails), email address of contacts (not official international representative) who would like to receive important information, and email address of other contacts who will only receive general information (like the newsletters).
Liz B. asks if representatives can be doctors. The Board explains that a doctor cannot be accepted as official representative if he is not a patient, except in exceptional situations due to last minutes problems.
All representatives are asked to check the list before the end of the meeting, to correct and complete it, and also to send to Alexandra any change in those data during the year.
The list will be redistributed after every change and updating.
5.2.Romania membership
Ann T.K. presents the application by Romania to join. She met in ClujNapoca 18 people with SSc from allover Romania, who were creating a Romanian organisation, and were translating their constitution into English. The council approves to accept Romania as a member when required forms will be received.
6.Fundraising
6.1.Corporatesponsorship
Ann T.K. explains that because of new European Legislation, patient organizations must be the ones who approach pharmaceutical companies, not vice versa. In that respect, letters of application have been sent to 10 pharmaceutical companies for support (Novartis, Sanofi, Pfizer, Actelion, Celgene, GlaxoSmithKline, Roche, Genentech, Medtronic, Orion, Cytori).
Considering suggestions to Ann T.K. by patients associations at the American Congress of Rheumatology, a scheme of graded corporate sponsorship has been decided by the Board for III World Congress and World Scleroderma Day (each project separately).This programme of sponsorship levels for corporations would prove a "varied portfolio" of sponsors.
Our corporate sponsorship levels, based on metals, are (in €):
1/10
For III World Congress
- Platinum25.000
- Gold20.000
- Silver10.000
- Bronze5.000
For Scleroderma Day
- Platinum30.000
- Gold25.000
- Silver15.000
- Bronze5.000
1/10
If wished, each member can adopt and suggest these levels to local sponsors, and also complete the scheme with as many lower levels as needed.
This corporate sponsorship scheme has already been suggested to Actelion and Pfizer.
-Actelion has responded favourably for SSc Day at Platinum level. They have already agreed to sponsor the congress heavily for the medical congress, so are not prepared to offer more than Silver level for the Congress
-Pfizer will answer on 12th April.
American Society has also promised 25.000 $ for WSC.
6.2.Report offundraising manager
Linda S. explains the main difficulties in fundraising. There are many European fundraising projects but many of them are assigned to EURORDIS.
The main advice is:
-Important to know who is the right contact in each company, and arrange meeting with him/her.
-Take into consideration the additional difficulty due to economic situation.
-Keep in contact and keep trying. Help and grants could be irregular in time, and not receiving one year does not mean never receiving. Hope must not be lost for following years.
6.3.Code of Practice
Ann presents the code of practice adopted by EURORDIS and other patients’ organizations, and sent to all representatives the week before the meeting. All those members who agree with it are asked to sign it. In case of not being prepared to sign, representatives are asked to read it and answer about itafter the meeting.
Adopting this code would require clearer transparency and more details about origins and uses of grants. In order to ensure that we observe recommended percentages about grants origins, more attention will be paid on the way of writing the accounts and considering how to reflect all kinds of grants and helps (for example payment of our hotel rooms by EUSTAR at World Congress).
7.Report on Website
Annelise R. presents the new website design, which consists of:
-A new platform, free and easier to work with: Wordpress. This will reduce current costs.
-A new layout, which structure is based on menus and submenus, with a very easy design for visitors.
All the members are asked to send information about their events, so all events around Europe will be shown in the calendar.
The council also talks about the possibility of a multi-language website. This would require the collaboration of each member for translation and Annelise will study if it can be done.
After discussing the options to have a private area only for members to share documents, the Council agrees to create a Dropbox account. Minutes, presentations, treasurer’s reports, posters and material for World Scleroderma Day or other projects, etc, are examples of documents that will be shared. The account and password will be sent to each representative. The password will be changed at least once a year.
8.DeSScipher Project
Beata G.T. presents the DeSScipher project, and explains its details, the active participation and involvement of FESCA aisbl in the project (as partner, and Beata as its FESCA manager), and what is required from each FESCA member.
It is an international EU-funded large research project that consists offive observational, non-interventional studies, conducted over a period of at least 3 years. The aim of the project is to improve the treatment strategies (medical care exclusively) for Systemic Sclerosis, and thus to improve quality of everyday life of patients.
FESCA aisbl is one of the 14 partners who participate in the project.
Main tasks of FESCA consist of general communication and dissemination, and will be supported by a specific budget from the project. Therefore, tasks and requests for each member of FESCA aisblare translation into own language and distribution of the information and material that will be prepared and distributed by Beata (in English):
-Sharing can be done on websites, newsletters, press releases, lectures on WSD
-An important request is to include the 3 logos in all materials.
-Up to 500€ will be given to each country to cover the costs during 2013. Detailed reports of actions and expenses, reimbursement form and invoices will be required to earn the money, and must be sent to Despo before 30 November.
- Sample documents must be sent to Beata G.T. as soon as completed.
Beata will inform us how patients can participate, especially in those countries which do not have any clinic yet on the participants list.
9.The EUSHnet Project
Sanja Roskar presents the objectives and main aspects of the project.
The main aim of the EUSHNet network is to improve non-pharmacological care and reduce inequity through an international network of health professionals working in SSc. This Network consists of a steering committee (which Ann T.K., Sanja and Jadranka B. are members of) and a network of local champions who will engage with and coordinate HP clinicians in own countries in conduct of activities of EUSHNet.
National champions are going to be selected next month.
The aim will be achieved through the following objectives, focusing all activities on physical, psychosocial and educational therapies:
-To improve expertise of HPs through support for knowledge generation and better education
-To establish standards of care based on need, evidence and models of best practice
-To facilitate communication/ exchange between HPs to achieve clearly defined standards of non-pharmacological care and rehabilitation
Next EULAR 2014 EUSHNET a proposal has been accepted with Ann T.K. as a speaker: “Physical and psychological wellbeing in systemic sclerosis”
10.The SPIN Project, global psycho-social interventions
Catarina and Angela present the state of SPIN project, a 5 years program, initiated in Canada, and whose purpose is to create a model for developing and testing psychosocial and rehabilitation interventions for people with SSc.
Structured in 4 areas (depression –self management –hands and function – body image distress), the development will eventuallybe set up on internet (in French and English), so can be used and tested by patients.
11.The BURQOL-RD Project
Alexandra presents the project outlines and first results, using a presentation prepared by BURQOLRD project leaders. The most significant aspects are:
-Participation rates in each country. Many representatives are surprised by the results, because the participation rates are lower than the number of participants known by representatives. Alexandra explains that this can be due to the fact that uncompleted or wrongly filled in surveys might not be taken into account.
-Recruitment is closed except in UK and France, where response is lacking and the deadline has been extended until 20th April, in order to have more answers. Representatives from UK are suggested to encourage their members to participate.
-At the moment, results are available only for Spain. The general conclusion is that Scleroderma is the disease which have the lowest total costs among the 10 diseases included in the project, but the highest indirect costs due to the important disabling aspect of scleroderma.
12.other research projects & trials.
12.1.IMPRESS 2 study
Dr Antonio Brucato proposed to involve FESCA aisbl and all the interested European patients associations in the enrolment of women in theIMPRESS 2 study:International Multicentric prospective study on PREgnancy in Systemic Sclerosis. The aim would be to ask a woman to collect her clinical data even if the local centre in which she is followed does not have the time, the interest, or the possibility to do it directly, supporting that centre with the involvement of the main centres. Further information will be sent later.
12.2.PAH Modeno Atlas
Ann T.K. wrote section on SSc. Now published, we have 2 copies, and are trying to get more, but it is very heavy to send. Catherine V is working on getting 25 copies sent to EULAR MADRID for distribution to doctors.
13.EUSTAR/WSF
Ann T.K. explains the main purpose of World Scleroderma Foundation: help people with scleroderma.Ann T.K.has been voted in as Board Member, representing patients.WSF is the creator and sponsor of WSC.
Ann was a trainer at the Biennial Training Course for Rheumatologists in Romania, funded for the trainees by WSF entirely.
WSF will hold a meeting on May 3-6 in Italy, in order to define best strategies for research into medical treatments.
13.1.World Systemic Sclerosis Congress in Rome 2014Team and organization
Grazia, Teresa, Nadine, Alexandra
All of them will be included in all emails and communications about the congress organization.
A specific email account has also been created for communications:
Nadine and Alexandra have prepared a “handbook”, based on the experience from the first two congresses. It will be sent all representatives, whose suggestions to complete missing aspects will be welcome.
13.2.ParticipationTasks
Representatives are informed that it will be essential to take on a task if given a room, and are requested to send suggestions as to what they might do.
13.3.Registration
We will ask AIM to do registration because we do not have resources to offer payment on-line.
The Council approves the price of registration: 35€. It includes coffee breaks and lunch the two days.
13.4.Accommodation
Grazia informs about different hotel rates. The most suitable one is Hotel Clar, in which 100 double rooms could be booked for 3 nights (double room would cost 70,00€ p/night for single use, and 90€ for double use, breakfast included, plus daily tax per person and night: 3€).
As a confirmation deposit (30%) is required for pre-booking now, this item must be analyzed to find possible alternative ways (ask possibility to manage booking through AIM). Grazia will also ask in other hotel.
13.5.Funding
US Society, Actelion and EUSTAR have confirmed funding.
13.6.Translation
AIM has sent quotations: more than 14.000€ for 3 languages (Italian, Spanish and French), too expensive if only few patients come from each country. Countries where more patients are expected to come from are Italy and Spanish speaking countries (including South America). For that reason, at this moment, only Italian and Spanish translation would be covered.
Italian associations are asked to help to funding the cost of Italian translation.
Representatives agree about charging an extra-fee to those attendees who will need the translation: about 20€. We will ask AIM about the possibility of including it in the registration process.
The council votes and approves that our priority is translation before underwriting the costs of a patient dinner.
13.7.Program
Ann T.K. will send all representatives a first draft version of the program. Opinions, suggestions and volunteer speakers will be welcome. As in the last congress, every lecture will be co-chaired by a doctor and a patient.
13.8.Patient poster session
Ann T.K. will ask if patient posters could be presented in the doctor posters exhibition, and if not, about the possibility to have a separated patients posters exhibition. Posters about ongoing projects could be presented.
14.Overview World Scleroderma Day
Beata reminds that WSD is a day to join celebrating the same reason. For 2013 WSD, FESCA will give a maximum of 1000€ to each country.
The rules to applying for the funds are:
-Accounting of programmed activities must be sent to Despo, within 1 month of this meeting.