THE NATIONAL ASSOCIATION OF VOLUNTEERS CORNELIA DE LANGE O.N.L.U.S.

The National Association of Volunteers Cornelia De Lange Syndrome -ONLUS was founded in 1997 by a group of parents of children with CDLS in order to:

• divulge the existence of this syndrome;
• protect the people affected by CDLS, spreading the diffusion of  the existing knowledge about it
• when needed, promote laws to improve their life conditions;
• encourage and support the training of  specialised people operating in the field of research, education, medical assistance and rehabilitation.

The people joining the Association are divided in:

• EFFECTIVE MEMBERS (parents of children suffering from CDLS). 150
• CONTRIBUTING MEMBERS (people who have allocated a sum for benefit of our association: relatives, friends, schools, firms and so on). 385
• SPECIALISED STAFF (therapeutists and doctors directly following one or more than one patients with CDLS). 273
• GENERIC STAFF (medical and paramedical staff who is in some way concerned with CDL Syndrome). 213

*updated to the end of 2004

The Association’s activities are almost entirely based on the voluntary work of parents, friends and technical staff.

 In 1999 we created an office working 6 half-days a week, which answers to families and operators searching for medical /technical information.

From Monday to Friday, 9 a.m. - 13 p.m.  Phone and Fax Number: 0721/34519.

E-mail: info@corneliadelange.org

Our Association:

• is member of the World Federation of CDLS Associations, founded in 2001 by CDLS Foundation. More than one specialised italian doctor has now become part of the SAC (Scientific Advisory Comitee) in the World Federal CDLS Associations: Dr. A. Seliconi (Scientific Coordinator for Italy) Dr. E. Basile, Dr. S. Luzzani, Dr. A. Memeo, Prof. P. Marchisio.
• takes part in the National Conference for Rare Pathologies, organized by the Minister for Public Health.
• is one of the associations partecipating to Telethon.