ASSOCIATION "LE PETIT MARC"
The association "Le Petit Marc" was created on 20 May 2005. Its purpose is to ensure a permanent reactive support, financial and moral to this family from Orleans (France) and to change attitudes and social arrangements in respect of orphan diseases.
Come support the Association by clicking this document
LIONS CLUB EVENNING
Evening organized by the Lions Club of Monaco for our Association has obtained a great success with the Franco-Italian comedian Claudio LEMMI, tombola made many happy. This event has enabled our Association to collect a sum of 10,000 euros. Thank you to the Lions Club of Monaco.
You will find the letter of LIONS Club we received. HERE .
SULTAN MARATHON DES SABLES
For the 5th time, Fabien DEBAUCHERON will run the famous "Marathon des Sables" in the Sahara, southern Morocco from April 5 to April 15, 2013. He runs in Transpole team for our Association. That is 250km in 6 steps, running and food self-sufficiency. You will find all the information and the ability to encourage him during the race on this site.
AAIM EVENING BY THE LIONS CLUB
LIONS CLUB of Monaco organizes an humoristic evening in our favor Friday, April 26, 2013 at the Hotel Hermitage, Salle Belle Epoque, Monaco.
You will find all the details and the registration form of this evening for the AAIM.
Come many !!!
SDPHN CONGRESS 2013
Congress in 2013 "Seminar of Pediatric Dermatology Necker Hospital for Sick Children" will be held Friday, June 21, 2013 at the Maison de la Chimie in Paris. Over 700 participants expected.
This day is intended for dermatologists and paediatricians liberal or hospital, general practitioners, pharmacists, and interns.médecins, GPs, pharmacists, interns and nurses.
You will find all the information on this site
What has happened during the year 2012, in our Association ?
The most important point was, thanks to you, to fund three research centers for a total of 70,000 euros. You can find details in this WebSite (heading "Tender").
Did you know that since the creation of our Association in January 2005, we have funded research centers for a total of 383,000 euros and always thanks to your donations.
But we made a small step to the colossal task that researchers have before them since this orphan disease that is the ICHTHYOSIS, takes hours and hours of research to correct the genetic defect or primary key.
Ichthyosis inherited are part of rare diseases, called orphan diseases, and the research funding is almost dependent on private funds.
Thank you to renew your membership in 2013 by filling the form you will find in the "Membership Form" and send it with your check. Easier to use card payment fully secure.
For more than a week, the Post Office Stamps of Monaco has appear on all mail posted in the Principality with a flame postal abbreviation of our association.
Results Braderie of Ecole des Revoires
Recently the Director of the Ecole des Révoires presented our Association, before a panel of schoolchildren and Athina, a check for 1,000 euros. The fruit of the School Braderie held last June. Thank you children. Annuler les modifications
JOYEUX NOËL et BONNE ANNÉE
Our results tenders
The Chairman of our Scientific Committee, Professor Jean-Philippe Lacour, we announced the synthesis evaluators on various tenders that our association has received from research centers. All underline the importance of three projects that were highly rated. We therefore unblock the amount of 70,000 euros in the coming weeks. We will tell you in a few days in the head "Call for Tender 2012" a summary of each project accepted.
Please note that since the creation of our association in 2005, we funded Research Centers for a total of 383,828 euros. Research Ichthyoses forward, we must continue for all children with this terrible disease. Only your donations allow us to continue to fight.
Friendly reception hosted by the ROTARY CLUB of Beausoleil, Roquebrune Cap Martin, La Turbie and Eze for the delivery of the check to our Association. Indeed, ROTARY CLUB was organized in June with Studio Monaco a theatrical evening was a huge success.
Our association has joined as an associate member the European network of associations of patients with ichthyosis: ENI (European Network for Ichtyosis). This election was held in Brussels last May. The European Network for ichthyosis is an international network run by national European patients associations. ENI is a common voice for ichthyosis patients ichthyosis and a partner for authorities on a European level.
PLAY FOR THE BENEFIT OF AAIM
The ROTARY CLUB of Beausoleil, in collaboration with the Studio de Monaco organized June 26, 2012 at "Théâtre des Variétés" in Monaco a play called " fil à la patte" by Georges Feydeau. The benefit of this evening will be for our Association.
THE OBSERVER OF MONACO May 2012
Monthly "L'Observateur de Monaco" published in its edition for the month of May 2012 an article about our Association.
Founded in 2004, "Association Athina Ichthyosis Monaco" fighting a rare disease: ichthyosis. Objective: To support research by raising funds. With a prestigious sponsor, Flavie Flament. And as a little girl mascot Athina. Read more article de l'Observateur de Monaco.
The "word" from the PRESIDENT
Our President, Gerard COMMAN, comments on our activities that took place during this year. These comments were sent to all members by post and email. It is more and more difficult to raise funds, but the fight must continue against the ichthyoses because advances in research makes us optimistic. We need you, we need your donations.
Our Association, once again, named in a specialised magazine
Professor MAZEREEUW-HAUTIER published October 11, 2011 in the journal "British Journal of Dermatology" information on the factors influencing quality of life in patients inherited ichthyosis. This study follows our contribution on the research we've funded in 2009.
The Night of the Associations
The "Night of the Associations" held on November 30 2011 at the Salle des Etoiles in Monte Carlo, under the patronage and in presence of HSH Prince Albert of Monaco.
In February 2012, we had the pleasure of receiving a check for 10,000 euros, representing a portion of funds collected by the "Night of Associations" they had divided into several Associations.
Our association named in a specialized magazine
Results of research team of Dr. Giovanna ZAMBRUNO published in the "Journal of Investigative Dermatology (2011) - Volume 13"
Web site : New Look !
The realization of this new presentation of this site was performed voluntarely by our Canadian friend Serge. We congratulate the quality of his work and we thank him for his big heart.
L'ICHTYOSE - Qu'est ce que c'est? on FACEBOOK. Guillaume MANEUF does a remarkable work on the behaviour of this website with much of testimonies and informations. To discover.
Fabien Debaucheron gives a direction to its competitions by supporting our association.
Fabien a réalisé un site oeuvrant pour la maladie d'Athina.
Our invitations to tender of the Year 2009 for research were stripped and 5 research centers were indicated to share the sum of 148.800 euros. The cheque was given to Professor LACOUR at the time of the annual evening of Association.
Transparency of our association
An article of press on the transparency of our association was published on the TV MAGAZINE of the FIGARO of the 30/04/2006.
The newspaper "Nice-Matin" reports, in its article of November 20 2005, a testimony on the ichtyose with the following title "Athina, the disease on edge".