Rare Disease Report

Pope Francis to Pray with Huntington's Disease Families

MAY 08, 2017
James Radke
On May 18th, Pope Francis will meet families affected by Huntington’s disease (HD).
This will be the first papal audience with HD families. Thousands are expected to attend the event at Aula Paolo VI (also known as the Sala Nervi) in Vatican City. The event should bring a spotlight on a disease that often remains hidden from the world. The 'hidden' motif also helped in naming the event - HDdenNoMore.
The gathering was inspired by the plight of families from Colombia, Venezuela and Argentina. Those families will travel to meet Pope Francis and raise awareness of disease.
HD is an inherited brain disorder that results in the progressive loss of both mental and motor control. Symptoms usually appear between the ages of 30 to 50, and worsen over a 10 to 25-year period until the patient eventually dies.
The psychological and physical symptoms associated with HD often make people hesitant to share their struggles with the outside world. It is hopeful that the Papal visit will help change the stigma attached to this rare disease so that it is no longer hidden.
Below, HD advocate Charles Sabine explains how the event came to be.

Below are 2 more clips from HDdennomore that introduce some of the families invited to the Vatican in the video below by HDdennomore as well as a short clip showing them receiving the invitation.


The event will include entertainment from Kate Miner, whose mother was diagnosed with HD and 2 sisters inherited the disease, as well as Silvie Lewis, whose mother passed away from the disease.
Political leaders, clinicians, patients, and advocates from over 20 countries are expected to attend the event. 

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