Case Study

Hidden No More reduces stigma of Huntington’s Disease

Shrouded in shame and stigma for centuries, a fatal genetic brain disorder called Huntington’s Disease (HD) was lifted out of the shadows when Pope Francis became the first world leader to meet with the HD community.

Assignment

> Lift shame and stigma.
Bring global attention to the first-ever HDdennomore convening, dismantle shame and stigma that keeps people and their families from receiving support and ensure the disease would be Hidden No More.

Strategy

> Mobilize global advocates.
Unite and galvanize the global HD community by giving them the tools to get the word out to the largest ever global coalition of HD advocates, including over 1,750 people and 30+ patient organizations from 26 countries about a convening with Pope Francis at the Vatican.

Program

> Frame a clear message.
Assemble an advocacy campaign of the collective voices surrounding the HDdennomore convening. The tools and resources included a film that documented the journey of five South American families with HD with one clear message, a website to centralize resources, weekly newsletter to keep the community connected and a strategic social media campaign to reach beyond the community.
Pope Francis speaking with an individual in a crowd.
Maria Esther of Columbia being interviewed by several members of the press.

Results

> A papal audience embraced those with HD and their families around the world.
In his speech at the convening, Pope Francis spoke to the extraordinary difficulties people face because of HD and said, “In many cases, the sick and their families have experienced the tragedy of shame, isolation and abandonment. Today, however, we are here because we want to say to ourselves and all the world: hidden no more!”
More than 300 international media placements including Associated Press, The Guardian and PBS NewsHour, raised awareness of the needs of HD families around the world, especially in South America where the disease is most prevalent.
Donations poured in to help support families and drive lasting impact for the lives of these affected families. A single-donor donation is funding proposals for community development projects in Maracaibo, Venezuela, where the gene for HD was isolated 25 years ago and where families are especially hard hit. A system is now in place for shipping medication from Europe to South America, and new programs for at-risk, malnourished children in Venezuela and Colombia have made demonstrable improvement in children’s health and well being.