1 ANNUAL REPORT FOR THE YEAR 2015 SUFFERERS and

138 impasse de Champs Gervais
74890 Bons en Chablais
France
Tel/Fax : 33 (0)4 56 30 74 43
e-mail : [email protected]
Site : www.cutislaxa.org
ANNUAL REPORT FOR THE YEAR 2015
SUFFERERS and FAMILIES
Identifying sufferers
On 1st January 2015, we knew of 260 sufferers. At the end of the year, 286 had joined us.
Each year new countries color a bit more our map of the world. But I am sure that, worldwide, many sufferers are
still isolated, without information and support. I hope one day they will find our name and address and that we will
be able to help them have a better daily life and break their loneliness.
Sufferers' census
9
34
71 87
136
109 127
238
204
169 186
145 162
260
286
2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015
Individual Contacts
We are still in regular contact with most sufferers and/or their families. We saw children grow, we shared hopes and
sadness. Cutis Laxa Internationale is a Big Family whose members help and support each other. Thanks to the
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Facebook Group dedicated to Cutis Laxa, chats arise, advice is given, and it is an indeniable benefit for each
member of the group. Created and moderated by Susan, Laura’s mother, it is a « closed » group only for sufferers
and their siblings as well as for doctors and researchers. As for me, I always keep my ears open and, as much as
possible, I always try to give the best answers and the best advice. I thank you all, sufferers, sufferers’ parents, for
everything we share, for all you give me and all the messages of friendship and gratefulness you send me.
Information by and for families
It is always with CLI~News that I keep you up to date with everything concerning Cutis Laxa.
Sufferers and their families also send us information they may have or find regarding medical and/or scientific
studies on Cutis Laxa, especially new publications. Thanks to them we can often get in contact with doctors or
researchers working on Cutis Laxa that we have not heard of yet.
Sharing information mutually enriches us and boosts researchers’ and doctors’ work.
Family Days
Regarding this issue, 2015 has been a quiet year for our Association. The next Cutis Laxa Days will be held in
Annecy, France, 5th to 8th May 2016.
In 2015, Dr Zsolt Urban could not organise, together with American families, clinics and meeting day for the
sufferers of the American continent, as he had not received the grant he had asked for it.
However he got the funding for 2016 and the American CL Days will be held on 17th , 18th and 19th March 2016.
Branches or Chapters abroad
Susan kept working in 2015 to set up « Cutis Laxa Foundation USA ». The achievement is close.
Families’ work
A few families are particularly active for our association, collecting funds or disseminating information. I will not
list them here but I wish to thank them all, they know who they are.
THE MEDICAL WORLD
Partners in Research Projects
Late in 2015 brought forward new lines of research, based on the « mechanical » aspect of elastic fibres, while
basic and genetic research also continued. We are always at the researchers’ disposal to answer their queries and
always do our best to help them implement their projects.
In particular, we have translated all the necessary legal documents (consent form, medical questionnaire, short form
consent, patient’s siblings and patient’s parents consent) to allow French patients to take part in the research
projects led in Pittsburgh by Pr Zsolt Urban’s team,
This is how we help researchers since we are unable to support them financially.
Conferences, Congresses and Seminars
Unfortunately, for financial and time availability reasons, we could not attend these events in 2015.
OUTREACH WORK
Relationship with other Support Groups
In 2015, we continued our exchanges with other associations, federations or umbrella organisation we belong to
since we were set up, whether in France or abroad. This active and relational work in the world of rare disorders is
still very important.
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Legislation
As we have done since we created the Association, we kept an eye on the evolution of legislation on rare and/or
orphan disorders, especially in France, but also in other countries.
All information gathered throughout the year 2015, has been sent to sufferers, and also to our members and donors,
either in CLI~News or via specific mails. Ensuring that sufferers are well informed in order to assert their rights is
one of our daily tasks.
Involvement in Society
Genodermatoses Network, European Reference Networks, FIMARAD (Rare Cutaneous Disorders
Channel),…. All these structures recently set up, especially in 2015, have a common main aim : to gather
together knowledge and resources to improve support and follow up for patients suffering from rare
disorders. They all take into account the advice of patients themselves and this is why we are involved, in
association with them.
ROUTINE WORKLOAD IN 2015
Disseminating Information
 The Internet remains the fastest and cheapest communication tool we have to disseminate information and
to help sufferers get in touch with us worldwide.
 Our Website : The counter indicated 26,447 visitors in January 2015. It showed 27,232 by the end of
December 2015, or 785 visitors during 2015. The average monthly number of visitors in 2015 was 66. The low
number of visits this year is due to the change our website address since Orphanet stopped hosting websites. As of
today, thanks to our frequent updates, we have returned to the first page of Google returns for « Cutis Laxa ».
Number of visits per year
3010
2939
3110
2982
3017
2422
1508
1160
1074
927
348
2002
2878
2004
2006
2008
2010
2012
1232
785
2014
Average monthly number of visits per year
174
259 248 251 251 245
240
202
126
90
97
77
103
66
2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015
We will pursue updating the site regularly. It is an important element in spreading information and raising
awareness. It often allows new patients to find us and find information on the Facebook Group.
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 Sending information files : We still receive regular requests for information files from students, school
pupils, etc, to which we answer as precisely as possible. This remains, and will still remain, an important element
that allows Cutis Laxa to be known as widely as possible.
 Leaflet : It is the first document we hand out to inform people about Cutis Laxa.
 CLI ~News » : As usual, we sent our 2015 issues ( February, July and December) to all our contacts
(sufferers and their families, members, donors, doctors, the media, etc). Across all languages we sent almost 600
copies. It remains totally homemade: original content and its translation in two other languages. From this year and
on, The Groupama Foundation will stop printing the Newsletter which will increase our running costs.
As in 2014, we continued sending it via postal mail, even if we add an electronic sending.
 Taking part in surveys Here too we have got into the habit of answering all kinds of surveys, questionnaires
linked to health or rare disorders.
Projects in the pipeline
Since 2005, our main action has been the collection of used cartridges and mobile phones we sell back to recyclers.
Since we left the Ile de Ré in 2009, we set up a new organisation that should have allowed us to increase the number
of collected cartridges: the recycler picks up the cartridges « at home », everywhere in France, each one can become
a « Relay Point ». Unfortunately, volunteers are too rare to reach the extent we hoped.
That is why the sums we collected thanks to recycling have become so low. Numbers of 2015 remain low.
Cartridges and Solidarity
5 072 €
2 030 €
4 500 € 4 500 €
3 000 €
2005 2006 2007 2008 2009
1 154 €
1 011 €
2010 2011
119,65 € 133,65 €
2012 2013
308,75 €
2014
We collected 1,208 cartridges but no mobile phones in 2015. Nevertheless, the buy-back rate is much better at 26 %
(9% in 2014). This is because we have optimized collections by being careful to collect only trademarked
cartridges. That is why we should collect a lot more cartridges than we do so we reach the amount collected during
the years 2006 to 2009.
Fetes and events
Here are the main events that marked 2014:
7th June, Walk of Support “Together to win against rare disorders”, organised, for our exclusive benefit by Groupama
17th July, 31st July and 14th August: Festival « Parc Fantasia » in Annemasse (France) with the Restaurant « Le
Piano
On 27th November 2015, them.
27th Novembre, Josée and Simon went to visit Rania and her family who recently moved to Quebec.
5th December: Virtual Walk for Rare Disorders during the Telethon. Rallying with social networks
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8 Décembre : Paris Dermatological Days. Thanks to Solhand and its Chair we were represented and our flyers handed
over.
8th December: Marie-Claude Boiteux was in Lyon to support Marie-Hélène Boucand who had her viva for her
Philosophy Doctorate.
This list is not comprehensive as we attended working groups meetings, Board Meetings, Annual General Meetings of
friendly associations or federations we belong to. We remain active in 2012.
The Media
This year again, the media helped us being seen, in France and abroad:
19 Mars 2015 : Charente Libre : Presentation of the € 1,000 cheque from the Triathlon and Brin d’Aillet Run in
Sireuil.
16 Juin 2015 : Terres de Savoie : Report on 7th June Walk of Support
03rd August 2015 : Le Dauphiné Libéré – Annemasse & Le Genevois : Fantasia Festival, we were present at the stall
of the restaurant « Le Piano »; The Disorder has no Frontiers.
16 November 2015 : National Organization for Rare Disorders (Facebook): Member Spotlight : Questions-Answers
with Cutis Laxa Internationale.
Communication tools and miscellany
We still have goods at your disposal if you need some (T-Shirts, video tapes, Beach Bags, Caps, etc). You can sell
them to the benefit of Cutis Laxa Internationale.
__________________________________
Before our Treasurer, goes through the Financial Report 2015, I would like to put this Annual Report for 2015 to
the vote. With your agreement, I propose that this vote be by a show of hands after answering your questions, if any.
________________________________
FINANCIAL REPORT 2015
Previous years showed a fall in the number of members and donors. In 2015 the number of donors is much
better thanks to the Walk of Solidarity organized by The Groupama Foundation. I hope we will succeed in
keeping such good figures in the future with similar events.
Number of Members and Donors
261
76
120
86 80
79
67
2004
2006
74 7665
Members
Donors
96
2008
76
51
3236 39 303832 4125 26 29
22
2010
2012
2014
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You will find hereunder the numbers of the 2015 Financial Report.
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9
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I would like to put this Financial Report 2015 to the vote. With your agreement, I propose that this vote be
by a show of hands as for the Annual Report, after having asked all explanation and questions you might
need.
_______________________________
SETTING THE MEMBERSHIP FEE FOR 2017
As we established, I propose that we agree the membership fee for next year that is for 2017. I propose that we keep
it to € 30 for the year 2017.
________________________________
PROJECTS AND DRAFT BUDGET FOR 2016
You will find them enclosed and I suggest that you take a look at them now. Feel free to ask any question or
explanation about them before we proceed to the vote. They are in line with the work we have done since we set up
« Cutis Laxa Internationale ».
138 impasse de Champs Gervais
74890 Bons en Chablais
France
Tel/Fax : 33 (0)4 56 30 74 43
e-mail : [email protected]
Site : www.cutislaxa.org
MINUTES OF THE ANNUAL GENERAL MEETING
SATURDAY 7th MAY 2016
Mrs Marie-Claude BOITEUX, Chair, opened the debate at 9:00 am . As notified by post to the
members, the agenda is:





ANNUAL REPORT 2015 and VOTE
FINANCIAL REPORT 2015 and VOTE
FIXING THE 2017 MEMBERSHIP FEES and VOTE
PROJECTS and DRAFT BUDGET 2016
GENERAL ISSUES
PRESENT :
Members : Mr C. Boisseaux, Mrs M.C. Boiteux, Ms C. Boiteux (Family-France), Ms H. Boiteux,
Mrs Marie-Hélène Boucand (Speaker AFSED), Dr Bert Callewaert (Speaker), Ms Katy Carta
(Family-USA), Dr Romain Debret (Speaker), Ms Nathalie Fournier (Family-France), Mrs Sophie
Khalilpour, Mr Serge Richemont, Mrs Martine Richemont, Mr M. Senaud, Mrs J. Sergeat, Mrs
Mireille Tessier (Family-France), Mr Daniel Wagschal (Dermatologist),
That is 16 votes
Patients and Families (non-members) :
Germany : Karl Biesemann-Gosda and his parents, Sarah Eise and her sister ;
Belgium : Lien De Keersmaker and her mother ;
Canada : Simon Begin and his mother ;
United-States : Laura Dickison and her mother ;
France : Mélissa Richemont ;
Great-Britain : Niamh et Isabel Caroll-Tottey and their mother, Kay Butterick (patient’s mother),
Dave Tuttle and his wife and son,
Mexico : Thais and Dahara Ludin ;
Sweden : Jonny Andersson and his wife ;
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Guests : Mr Alain Boisseau (Speaker), Mr Paul De Brem (Moderator), Dr Maxime Etienne
(Speaker), Mme Yanne Louys-Elizon (Speaker), Mme Dominique Muller (Translator), Mme
Michelle Murrow (Speaker), Dr Pascal Sommer (Researcher) ;
Other Attendee : Mr Nicolas El Robrini (Régentis Pharma Laboratory)
APOLOGIES WITH PROXY GRANTED TO :
MsC. Boiteux : Mrs Gandolfo-Tonnelier Isabelle
Mr C. Boisseaux : MrsGaillard Myriam, Mr Garidou Jean
Mrs J. Sergeat : Mr Carbonnier Michel
Mrs M.C. Boiteux : Mme Fichet Chantal, Mr Boutron Jean-Claude, Mr Petit Robert
Mrs M. Richemont : Mme Heger Nicole, Mr Héger Richard
Mrs N. Fournier : Mme Lagrange Marie-France, Mme Rosa Esabel
Mr S. Richemont : Mme Mounier Edithe, Mr Beaudonnet Georges
This totals 13 votes by proxy.
In 2015, there were 29 members. The total number of members present or represented by proxy is
29. Therefore, the meeting is quorate to vote on the agenda items (at least 1/3 of the members).
ANNUAL REPORT
The Chair presented the 2015 Annual Report. Then she asked if there were any questions about it.
She then asked the meeting to vote the approval of this Annual Report.
Abstentions : 0
No: 0
Yes : 29
The Annual Report was unanimously approved.
FINANCIAL REPORT
The Treasurer presented the 2015 Balance Sheet. The Chair asked if there were any questions and
then asked the meeting to vote the approval to this Financial Report 2015. (The currency used is
Euros)
Abstentions : 0
No : 0
Yes : 29
The Financial Report was unanimously approved.
FIXING THE 2016 MEMBERSHIP FEES and VOTE
The Chair proposed to fix the membership fee for 2017 at € 30.
Abstentions : 0
No : 0
Yes : 29
The fee was unanimously fixed
PROJECTS 2016
The Chair presents the Association’s Projects for 2016
Abstentions : 0
No : 0
Yes : 29
The Projects for 2015 were unanimously fixed
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DRAFT BUDGET 2016
The Chair presented the 2016 Draft Budget showing income and expenditure corresponding to the
Projects presented by the Chair. This budget is presented under the analytical form those which
permits to better visualise the expenses of each action.
Abstentions : 0
No : 0
Yes : 29
The Draft Budget 2016 was unanimously fixed.
As there were no more questions, the Chair closed the meeting at 10:30 am.
The Chair
Marie-Claude Boiteux
The Vice-Treasurer
Justine Boiteux
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