About the Event


On May 18, at Aula Paolo VI in Vatican City, Rome, Pope Francis became the first world leader to recognize the devastating plight of those living with and affected by HD.

Watch Charles Sabine explain how and why HDdennomore came to be.

The global gathering was inspired by the plight of families from South America most ravaged by HD. Families from Colombia, Venezuela and Argentina (meet the families) traveled to meet with Pope Francis and join an audience of thousands at the Vatican to drive awareness of HD and to lift the stigma around the disease.

Watch the event

About the Organizers and the Initiative

A global coalition of Huntington’s Disease advocates has come together under the HDdennomore initiative (pronounced ‘Hidden No More’ or ‘Oculta Nunca Más’ in Spanish and ‘Mai Più Nascosta’ in Italian) to raise awareness of HD and mobilize action to end the stigma and shame around the disease that has persisted for generations. The leaders of this effort were instrumental in bringing this issue to Pope Francis. The HDdennomore team includes Charles Sabine, Elena Cattaneo, Ignacio Munoz-Sanjuan, Claudia Perandones, Louise Vetter and many others!

In addition to the big event on May 18, the HDdennomore team has been hard at work planning a series of events in Rome to shine an even bigger light on HD during this critical and historic week for the HD community.

Prior to the event, the President of the Italian Senate Pietro Grasso welcomed physicians, patient associations and patients from Latin America during a special meeting at the Senate Chamber.

In addition, physicians from Latin America met with physicians from Gemelli University Hospital, Rome to exchange experiences in treating HD patients and to form what is sure to be a lasting network of exchange to improve the care and treatment of those affected by HD around the world.

Who was there

IT’S A GLOBAL MOVEMENT! IIn addition to the HD families in attendance, take a look at just some of the advocates, supporters and celebrities who attended from more than 20 countries.

Some of the HD patient organizations that joined us include:

Agrupación Chilena de Huntington (ACH)
AICH Milano – Huntington Onlus
AICH Roma Onlus
AICH Napoli Onlus
Asociación Corea de Huntington Española (ACHE)
Associação Brasileira de Huntington (ABH)
Associazione Italiana Huntington Emilia Romagna (AIHER)
Auckland Huntington’s Association
Caritas Huntington Support Group
Deutsche Huntington Hilfe e.V.
Dingdingdong (France)
European Huntington Association (EHA)
European Huntington’s Disease Network (EHDN)
Factor H
George Huntington Institut
HD Reach
Hereditary Disease Foundation (HDF)
Hope Conquering Huntington’s
Huntington France
Huntington Onlus
Huntington’s Disease Association UK (HDA)
Huntington’s Disease Association of Ireland (HDAI)
Huntington’s Disease Society of America (HDSA)
Huntington’s Disease Youth Organization (HDYO)
Huntington Society of Canada (HSC)
International Huntington Association (IHA)
Ligue Huntington Francophone Belge (LHFB)
Lega Italiana Ricerca Huntington (LIRH)
Polish Huntington’s Disease Association
Riksförbundet Huntingtons sjukdom (RHS)
Unión de Enfermos y Familiares de Huntington (UEFH)

Big names in music & entertainment

Argentinian singing sensation Axel
Los Angeles-based folk rock band Miner
Folk musician Sylvie Lewis
Venezuelan-born actor and producer Juan Pablo Yepez

Italian and foreign dignitaries

Ambassador of Venezuela in Rome
Members of the Italian Parliament
President of the Italian General Medical Council
Representative of Embassy of Argentina to the Holy See
Representatives from the Rotary Club

Leading researchers, scientists and clinicians, including:

CHDI Foundation
Consiglio Nazionale delle Ricerche
Fondazione I.R.C.C.S. Istituto Neurologico Carlo Besta
Fondazione Policlinico Universitario Agostino Gemelli
Johannes Gutenberg University Mainz
Karolinska Institute
Nizhny Novgorod Medical Academy
Royal Devon and Exeter NHS Foundation Trust
Sapienza University
Tel Aviv Medical Center
University of Auckland
University of California
University College London
University of Florence
University of Milan
University of Rome
Yale School of Medicine
Clinicians from hospitals throughout Europe, and North and South America

And many, many more!

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Photos by Pier Paolo Lisarelli Photography