The annual meeting of the LIRH Foundation

The Italian League for Research on Huntington and related diseases Foundation (LIRH Foundation) had their annual meeting in Rome 3rd of December 2016 – the same date as the International Day of People with a Disability. The meeting was open to all interested families and professionals.

The meeting was given the title: HD Research borders: from initial findings to experimental results. It took place at Istituto Leonarda Vaccari – Viale Angelico 22, Rome from 10.00-16.00.

LIRH is a non-profit organization supporting and conducting scientific reserach, providing patients with free of charge assistance, promoting awareness raising initiatives, training professionals and spreading research results. If you want to read more about LIRH you can visit their homepage.

Huntington’s disease (HD) affected in Italy counts about 6 500 patients and 35 000 people at risk. The meeting  was a good opportunity for the HD community to learn more about research, to ask questions, get answers and meet other families from all over Italy. Over 230 participants had signed up to participate.

The program consisted of scientific updates and personal stories. The stories where shared by:

  • Maurizio Stumpo from the Republic of San Marino
  • Mohammed Al Haijri from Sultanate of Oman
  • Barbara D’Alessio from Italy

Scientific representatives are:

  • Ferdinando Squitieri who gave an overview on the ongoing HD clinical trials.
  • Blair Leavitt who focused on the IONIS-HTT trial.
  • Umberto Sabatini that talked about Huntington’s disease and neuroimaging.
  • Dr Laufer from Teva who explained why the pharma industry is investing so much time and effort in HD research.

The chairperson was Ilaria Ciancaleoni Bartoli, a journalist and director of Osservatorio Malattie Rare.