Pope Francis To Meet With The Global Huntington's Community To Shine A Light On And Lift Stigma Of Disease

USA - English

• Latin America - español

ROME, April 13, 2017 /PRNewswire/ --

Pope Francis will be the first pope to recognize Huntington's disease (HD) and welcome what is expected to be the world's largest gathering of the HD community to the Vatican.

The global gathering was inspired by the plight of families from South America – where prevalence of the disease is among the world's highest. Families from Colombia, Venezuela and Argentina will travel to meet with Pope Francis and join an international audience of thousands affected by HD at the Vatican to drive awareness and lift the stigma around the disease.

Huntington's disease is an incurable genetic brain disorder affecting nearly one million people globally. It has no cure. The disease deteriorates a person's physical and mental abilities, often during their prime working years. The symptoms of HD, including involuntary movements as well as cognitive and psychiatric challenges, have forced many of those affected to hide the disease for fear of public criticism, discrimination and unfair treatment.

Through the participation of families living in Venezuela's Lake Maracaibo, the huntingtin gene was identified nearly 25 years ago, helping catalyze critical research and interventions to improve the lives of those affected by HD. Yet few treatments exist and the disease continues unabated globally.

The event is part of HDdennomore – pronounced 'Hidden No More' ('Oculta Nunca Más' in Spanish or 'Mai Più Nascosta' in Italian) – a global initiative of HD patient advocates.

Media Opportunities:

1. Pre-event interview opportunities: Researchers, physicians and patients of the HDdennomore coalition closely connected to and responsible for organizing the meeting with Pope Francis.
2. On-site media roundtable with families from South America and HD advocates: A media roundtable will be held on May 17 in advance of the gathering. Details to follow. 
3. Event: The event will be open to media. Pre-accreditation and event registration required per Vatican protocol. Please contact us for details.

Click here to view the alert in Spanish and Italian.

SOURCE Huntington's Disease Society of America