LIRH Outpatients Services in Italy
Neuropsychiatric, genetic and psychological free of charge assistance are provided in the following locations:
- Rome: every day, except Thusday;
- Campi Bisenzio (Florence): every month, once a month;
- Milan: once every two months;
- Isernia: once / twice every two months;
- Catania: every month, once a month.
In 2015, more than 600 people, including patients, individuals at risk and their families, has been visited in our outpatients services.
Furhermore, a productive collaboration with the Neurology Hospital of San Marino Republic, where a HD Clinic was launched, was developed in 2016.
The Neurogenetics Clinic in the Sultanate of Oman
Our commitment in the Sultanate of Oman began in 2013, in response to a request for help received by email by Mr Mohammed Al-Hajri, a 18 affected individuals family member. Thanks to him, we learned that in that Country there was a lack of care and of genetic diagnostic skills for Huntington's disease.
A couple of LIRH delegates joined Muscat to meet other family members, to meet with the Italian Ambassador (Dr. Paola Amadei, who was of great help in sensitizing local authorities), to meet with the Neurogenetics Center at the Royal Hospital director, Dr. Anna Rajab. After that, the Minister of Health, Ahmad Ben Mohammad Ben Obaid Saeedi, officially launched – in a public conference - the Neurogenetics Center at the National Genetic Centre in Muscat in November 2014. Ferdinando Squitieri, LIRH scientific director, was requested to become supervisor of the Neurogenetics Center for it concerns Huntington Disease - for both clinics and laboratory activities- in collaboration with dr. Anna Rajab and dr. Jaber Al- Khaboori, Director of the Neurology Dept. of the Royal Hospital.
In 2015, 40 people were assisted: 25 affected and 15 at-risk.
Thanks to LIRH inputs, the Oman Huntington's Disease Association was also set up: www.hdom.org.
The Toll-Free Number
The Toll-Free Number 800388330 is active Monday to Friday, 9.00 to 14.00 and 15.00 to 18.00.
People call us from all over Italy, mostly asking information on: HD inheritance; genetic testing; prenatal genetic testing; how to take a visit; how to be enrolled in clinical trials.
In 2015 we registered 3.783 incoming calls (about 20 % more than 2014). In the first quarter of 2016, we recorded about 1.400 incoming calls .