CLOSURE OF OUR ASSOCIATION
The increasing difficulties to raise money to fund research, added to other problems force us to permanently close our association. Our small group of volunteers is proud to have over 10 years to devote some of his time fighting this orphan disease called ichthyosis.
This site will live a few months to allow our visitors to be informed about research advances our tenders have caused. It will become just an information website.
Thank you to all.
P.S. Before making a decision to this effect during the first quarter 2015 we were able to use some of the funds entrusted to us.
We participated in the funding of a research project of Dr. Giovanna Zambruno in Rome. The details of this research project is available on our website.
We also made substantial financial support to the association "SOLEIL DU COEUR" which aims to help families of children with Ichthyosis.
After final closure of accounts and approval of the dissolution by the Departments concerned, according to the Monegasque law we can pay the balance of our funds to a charitable organization headquartered in Monaco and caring to help sick children or disabled.
OUR ASSESSMENT AFTER 11 YEARS ON
Indeed, our association created in 2004 by a few volunteers revolted from the disease whose small Athina was reached, decided to meet regularly to find the financial resources to accelerate scientific research on this orphan disease.
We asked individuals, corporations and service Clubs, created sporting and cultural events, organized and participated in Congress on Ichthyosis, mastered our overhead costs amounted to less than 700 euros in 2014 and many other transactions that we allowed during this period, receiving about 450 000 euros.
Centres following searches:
- Nice University Hospital - Dr. Christine CHIAVERINI
- National Genotyping Center (DEBRE Association) in Evry - Dr. Judith FISHER
- Syngros Hospital in Athens - Professor Nicolas Stavrianeas
- Instituto Dermopatico dell'Immacolata Rome - Dr. Gianna Zambruno
- Necker Institute in Paris - Professor and Professor Alain HOVNANIAN BODEMER
- Department of Dermatology, Hôpital Purpan in Toulouse - Dr. Julia Mazereeuw-HAUTIER
- Ospedale Bambino Gesù in Rome Pediatrico - Dr. Zambruno
- Association Midi-Pyrenees Toulouse Health - Dr Mazereeuw-HAUTIER
Selected after bids by our Scientific Advisory Board, the Research Centres have benefited from nearly 98% of donations received.
The results of this research that now appear in the "current results" demonstrate that our cause was not in vain, but much work remains to be done to improve the diagnosis, treatment and genetic counseling of Ichthyosis congenital or other forms.