Incontro famiglie Pugliesi Bari 8 settembre 2019

HD families from Puglia Region met in Bari on September 8, 2019

On Sunday, 8 September 2019, the second meeting among the HD families living in Puglia Region (Southern Italy) was held in Bari. The meeting was promoted by LIRH Puglia Association, formally established soon after the first meeting was held, in June 2018. 

 

 

Sixty-five people from all the provinces of the region have met at Nicolaus Hotel in Bari, which we thank not only for having hosted the meeting for free, but also for having kindly offered the lunch to all the attendees.

 

Nicola Micchetti and Stefano Ronga, respectively President and Vice President, illustrated the objectives and the program of of LIRH Puglia Association.

 

The participants expressed the difficulty, but also the desire, to talk about the disease within their own families. They discussed the opportunity to promote greater recourse to neuro-rehabilitation and the need to take action with regional health Institutions  to put forward proposals relating to the accessibility to drugs and home care. They shared information on what are the local health services already available in the area, which not everyone knew. The meeting took place in a climate of great attention and participation, above all on the part of the young people, who were really many.

 

Special guest was Prof. Ferdinando Squitieri who, invited to talk about the therapeutic perspectives for Huntington's disease, sent a message of hope but above all of responsibility towards research support.

 

Barbara D'Alessio, Executive Director, Mariateresa Moscato, observational research programs Study Coordinator and Maria Gabriele, secretary were present on behalf of LIRH Foundation;

 

A great desire to know each other emerged and - which we are very pleased to emphasize - to actively participate in research programs.

 

We will all meet again on December 14th in Rome for the annual LIRH convention, we are waiting for you!

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