foto eha board ed eh cope

Stronger Together, Better Together: EHA Conference 2019

The EHA Conference EHA ended a few days ago and the sense of belonging, sharing and hope that permeated this three days in Bucharest, Romania is still strong in us.

The conference brought together over two hundred people from many different Countries, not only from Europe: representatives of patient and research organizations, patients, family members, partners, nurses, physiotherapists, music therapists, dentists, psychologists, rehabilitation therapists met, recognized and compared on the most frequent needs of HD patients in their daily lives.

How and when to talk with children, how to deal with the couple's relationship, how to manage the most acute phases of the disease, how to create and run an association.

Pharmaceutical companies involved in experimental studies provided updates on their ongoing studies. You will hear about it at the LIRH 2019 Annual Conference on December 14th in Rome.

The slogan of this year's European Conference - which we are fully committed to - was Stronger Together, Better Together: together we are not only stronger, but also better. This is certainly true in the global community, even if the same cannot be said for our national community.

We are proud of the contribution and participation of LIRH at this EHA Conference 2019:


She was a member of the organizing committee of the Conference, together with Astri and Bea, as vice president of EHA; as executive director of LIRH, she presented a poster on  Huntington Place (Spazio Huntington)


He brought his testimony on the NOI youth association Huntington in a dedicated session;


He prepared the Noi Huntington poster, which illustrates the HD youth associations objectives and activities;


He took part in the photo contest by sending a photograph that expresses his relationship with Huntington's disease ... and he won it!


He participated not only in the Conference, but also in the first official meeting between the EHA board and HD-Cope team, of which he is a member


He led and coordinated the session on pediatric Huntington's disease, opening up a world of entirely new knowledge in light of his recent scientific discoveries.


We have all learned and sang North Star, the Huntington Community song, which we invite you to listen to and sing along!

A rich photo gallery is available at