ASSOCIAZIONE CONTO ALLA ROVESCIA
"per la diffusione dell’informazione e la ricerca sulla malattia esostosante e sulla sindrome di Ollier/Maffucci"
Headquarter : Piazza Pietro Merolli 2, Pal B – 00151 ROMA
WHO WE ARE
The need to make our voice heard and to try to make people aware of these rare syndromes, which are mainly unknown, has meant that on 16th February 2006 a group of parents founded a non-profit association that aims to help all those who need support.
Hereditary multiple exostosis (known as HME) is a rare hereditary genetic condition diagnosed by an increase of protuberances in and near the joints of tubular bones (arms, legs, shoulders, pelvis and fingers). Exostosis can be rounded or pointed and can continue to grow until adulthood. This abnormal bone growth can make people with multiple exostosis develop short stature and may result into the arching and curving of bones of the arms and legs, which can affect limb movements causing stiff and painful joints.
The Ollier condition could be described as a growth of several enchondromas spread throughout the body, on the short and long limb bones and especially on the hands and feet. The enchondromas are benign tumors made up of cartilage that grows on bones. Growth usually appear during the first few years of a child. Ollier is mainly treated through bone surgery.
Maffucci syndrome is a rare congenital disorder, not hereditary, in which the presence of multiple enchondromas is associated with vascular lesions of soft tissues.
The Associazione Conto alla Rovescia (A.C.A.R.) aims to offer help and support to those who suffer from HME, Ollier and Maffucci syndromes. The main aim of A.C.A.R. is to get Italian hospitals involved and working together with the specialist hospitals which are already focusing on the research and treatment of these conditions. This would help patients be referred to competent doctors practised in this field.
Another important aim of A.C.A.R. is to support research that at the moment has to rely solely on private and local government aid.
For all this A.C.A.R. needs your help, however small your help will be of great importance to the support group.
Help us to give hope to the future of our children and of all those affected by these conditions.
Let us thank you for what you can and wish to do to support us.
Maria Roncaccia Gabriella Massa
Feliciani Claudia, Giuseppe Scognamiglio
SCIENTIFIC RESEARCH AREA
Responsible: Eleonora Grippa
M. Cecilia Laforgia