a real hope for patients with rare haematological disorders - thalassemia · 2017-06-08 ·...
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A REAL HOPE FOR PATIENTS WITH RAREHAEMATOLOGICAL DISORDERS
The Campus of Haematology "Franco e Piera Cutino" is a pioneering center for prevention, care and research on thalassemia and haemoglobinopathies, and for the reception of patients’ families and their guests.The structure was inaugurated on May 8 2013 at the Hospital "V.Cervello", A.O.O.R. "Villa Sofia - V.Cervello" of Palermo, under the agreement between the Foundation "Franco e Piera Cutino", the Association for Research "Piera Cutino" Onlus, the U.O.C. Haematology for Rare Diseases of Blood and Haematopoietic Organsand the Health Department of the Regione Sicilia.The Campus was made entirely through private fundraising organized during the years by the Association for Research "Piera Cutino", non-profit organization established in 1998 by the Cutino family.A dream has become a real fact. The Campus was born from the spirit of solidarity and openness to life that has inspired the work and the activities of the Cutino family and especially of Franco, who suffered from the loss of her daughter Piera, a 23 year old girl ill with Thalassemia in 1982. Since that sad event, Franco Cutino has dedicated his life to the commitment and fundraising for the improvement of the thalassemia patients and their families condition of assistance, and for funding research aimed at the discovery of a possible therapy.In 2003, shortly before his death, Franco Cutino dreamed of a large building, white and blue, the colors of the sky and sea: a place entirely dedicated to the care of thalassemia and other rare blood diseases. Today the Campus reproduces, also in the architecture and colors, the image Franco dreamed.The dream became a concrete reality thanks to the synergy and close collaboration over the years between the Association "Piera Cutino," the Foundation "Franco e Piera Cutino", set up in 2005, and the U.O.C. Haematology for Rare Diseases of Blood and Haematopoietic Organs, directed by the Professor Aurelio Maggio.
Campus of Haematology “Franco e Piera Cutino”
The main stages
1995
1998
1999
2005
2009
2012
2013
Constitution of the Haematology II Division, now called Complex Unit of Haematology for Rare Diseases of Blood and Haematopoietic Organs.
Establishment of the Association for Research "Piera Cutino" Onlus.
Recognition of Hematology II as Regional Reference Center for Thalassemia.
Establishment of the Foundation “Franco e Piera Cutino”.
Start up of the building works on the Campus of Haematology "Franco e Piera Cutino".
Convention between the Foundation "Franco e Piera Cutino",
A.O.R. "Villa So�a - V.Cervello" and the Health Department of the
Regione Sicilia.
Inauguration of the Campus of Haematology “Franco e Piera Cutino”.
Purposes
Surface: 4.500 sq.m.
Floors: 3 + 1 basement (of which: 1 for the ordinary clinical activity and hospitalizations; 1 for “CasAmica”; 1 for diagnostic and research laboratories; 1 for biobank, gene therapy and cellular therapy)
Day Hospital Beds: 8
Hospitalization Beds: 6
Beds for transplant in Sterile Unit: 2
"CasAmica" Accommodation: 26 rooms and 54 beds.
Our facilities
The Campus of Haematology "Franco e Piera Cutino" stands as center of excellence for the whole country.Its purposes are:
prevention, care, basic and applied research in the field of thalassemia and rare hematological diseases;
patient care (with Day Hospital Area, Hospitalization Area, Sterile Unit for transplant patients, Transfusion Rooms, Toy Library, Home Therapy Service);
training of doctors, biologists, engineers and highly qualified team coming from the Mediterranean area;
the reception by the accommodation "CasAmica", designed to host the families of all hospital patients and other guests of the Campus.
Our Labs
The Campus of Haematology "Franco e Piera Cutino" stands out not only for routine clinical activities but also for the several and exclusive outstanding activities at national and international level in different clinical settings and research, thanks to highly qualified staff and participation in innovative projects promoted and supported in collaboration with the Foundation "Cutino".The Campus carries out the following activities:
Structures and Activities
PREVENTION Coelocentesis: exclusive technique of prenatal diagnosis by coelomic fluid fetal cells(the only center in the world).
Prenatal diagnosis by Chorionic Villus Sampling and Amniocentesis.
Test for the study of Thalassemia healthy carrier.
First level screening for Beta-Thalassemia and Haemoglobinopathies.
Genetic studies for the identification of the CysticFibrosis healthy carrier.
Communication and Training Activities.
DIAGNOSIS LicNet (Liver Iron Cutino Network) system: Nuclear Magnetic Resonance Imaging R2 for the non-invasive measurement of liver iron concentration (LIC).The Campus is the Promoter Centre and Coordinator of Licnet network, the first national network in the world for the development and dissemination of the exclusive method RMN R2 via the Ferriscan of the company “Resonance Health”.
Cellular, Biochemical and Molecular Diagnostic of numerous genetic diseases, such as: Thalassemia, Sickle Cell Anemia and other Haemoglobinopathies, Hereditary spherocytosis and other defects of the erythrocyte membrane protein, G6PD deficiency and other enzyme defects of the red blood cell, Cystic fibrosis, haemochromatosis, Crohn's disease, Wilson's disease, Aceruloplasminemia, Refractory Anemia, Interleukin 28B for Antiviral Therapy, Congenital dyserythropoietic anemias, thrombocytopenia, Polycythemia Vera, Acute Intermittent Porphyria, Noonan Syndrome, Pyruvate Kinase Deficiency, Pharmacogenomics for the response to Fetal Haemoglobin inducers, Bernard Soulier Syndrome, Immune Deficiency Syndrome, Dysmorphisms.
THERAPY Ambulatory, Day Service, Day Hospital, Ordinary Hospitalization.
Therapeutic treatments for Thalassemia with the presence of a multidisciplinary team consisting of pediatrician, cardiologist, hepatologist, gynecologist, educator, endocrinologist.
Sickle Cell Anemia Treatment.
Congenital and Acquired Hemolytic Anemias treatment.
Treatment of rare blood diseases, including Paroxysmal Nocturnal Haemoglobinuria, Acute Intermittent Porphyria, Aceruloplasminemia.
Home therapy: exclusive medical and nursing home service, with performing scheduled with drawals, visits and transfusions for thalassemia patients.Active since 2011 and unique service in Sicily.
RESEARCH Clinical Research on Thalassemia and Sickle Cell Syndrome.
Gene therapy for the cure of Thalassemia: participation in one of the first clinical trials in the world at the Memorial Sloan Kettering Cancer Center in New York; studies on mobilizations of haematopoietic stem cells from thalassemia patients; manipulation of stem cells for regenerative medicine.
Bank of Mesenchymal Stem Cells from Amniotic Fluid and Umbilical Cord Blood, the first public health center in Italy.
RI.Med.Ri: Leader Center of the project for the Regenerative Medicine Integrated Network. The first regional network of biobanks.
IUHSCT: Feasibility studies on in utero stem cell transplantation for the haemoglobinopathies treatment.
DEEP Project: multinational clinical trials for the use of deferiprone in pediatrics.
Multicentric study on the efficacy of deferasirox-deferiprone vs. deferasirox or deferiprone.
Multicentric study on the effectiveness of HU in sickle cell disease.
ACCOMODATION “CasAmica”: the accommodation with all the comforts of a hotel dedicated to the reception of the inpatients family members of the hospital "Villa Sofia - V.Cervello".The structure was built entirely with private funds by the will of Cutino family and, with its 26 rooms and 54 beds, offers hospitality to researchers, pharmaceutical representative, trainees and participants in educational events related to Haematology topics.It is also office of the "Piera Cutino" Association and of "Franco e PieraCutino" Foundation.
Toy Library: a space in the Campus Clinic Area dedicated to young patients and their parents.
Internships: the presence of "CasAmica" allows to perform specific internships for all activities of the Campus to those who request it to the Secretary of the Association for Research "Piera Cutino".
Contacts and useful numbers
U.O.C. Haematology for Rare Diseases of Blood and Haematopoietic Organs - Director Prof. Aurelio Maggio
Campus of Haematology “Franco e Piera Cutino”,Hospital “V.Cervello”, A.O.O.R. “Villa Sofia - Cervello”Via Trabucco 180, 90146 Palermo
ReceptionTel: 0916802975Email: [email protected]
Reception (Building F)Tel: 0916802894Email: [email protected]
Secretary (Building F)Tel: 0917803100 - 0916802841Email: [email protected] [email protected]
InfirmaryTel: 0916802030Email: [email protected]
Head NurseTel: 0916802976Email: [email protected]
Doctors Room (Hospitalization Area)Tel: 0916802101Email: [email protected]
Doctors Room (Transfusions Area / Day Hospital / Day Service )Tel: 0916802983 - 0916802447Email: [email protected]
Transfusions RoomTel: 0916802054
Head Office (Building F) - Prof. Aurelio MaggioTel: 0916802012Email: [email protected]
Accomodation “CasAmica”Director Mrs Carola Donato
Reception: 091 7651826Availability: 377 2903443Email: [email protected] - [email protected]: www.casamica.org
Association for Research “Piera Cutino” OnlusPresident Prof. Alessandro Garilli Head Office: Via Trabucco n. 180, 90143 PalermoSecretary: 091 7651825Email: [email protected]: www.pieracutino.itHead of Communications and External Relations: Dr. Sergio ManganoEmail: [email protected]
Foundation “Franco e Piera Cutino”President Dr. Giuseppe CutinoHead Office: Via Mistretta, n. 4 – 91011 Alcamo (Trapani)Secretary: 091 7651825Email: [email protected]: www.fondazionecutino.itHead of Communications and External Relations: Dr. Sergio ManganoEmail: [email protected]
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