Data Collection & Advocacy

DATA COLLECTION & ADVOCACY

Finding families affected with Huntington’s disease is the first step in getting them help. Many patients do not have genetic or neurologic diagnosis and therefore can’t access government benefits. The first step in preserving their rights is to engage every person at-risk or suffering from HD. By conducting educational campaigns at a local and national level, Factor-H attracts attention to afflicted families and facilitates assistance, whether medical, social or legal.

Programs

ART 4HD Program

Art4HD aims to disseminate the situation of the HD affected communities via art projects, including Street art (installed in the most affected clusters), illustrations, and photography. We collaborate with Latin American, North American and European artists to bring to light the families we support and to communicate our solidarity with them. Art is a vehicle for social change and a mechanism to honor those suffering or lost by the disease.

Legal Assistance to Families

Factor-H started a formal collaboration with Area Andina University foundation to provide legal support by specialists working to ensure patients’ access to medicines, beds, wheelchairs etc., as covered by existing legislation in Colombia. A focus of the program is on conflict resolution and supporting a legal defense in cases where patients are imprisoned for being ‘drunk’ or for behavioral-related issues due to the disease. A Similar strategy is being adopted in Venezuela. Factor-H can provide legal expert medical opinion to legal authorities about their HD diagnosis and the consequences on the disease in promoting troubling behaviors.

Clinical Consensus for Latin America

Following the GRADE methodology, the clinical consensus program aims to generate an evidence-based analysis of best practices for care of HD patients, tailored to Latin America based on cultural, legislative and medical standards. More than 50 HD specialists from Mexico to Argentina have engaged Factor-H in this Roche-sponsored project, which we hope to complete in 2022.

Incidence Survey

Knowing where families with HD or at-risk for HD is critical in structuring assistance and advocacy programs. Factor-H has generated App-based surveys to collect medical and socio-economic information about every family affiliated with Factor-H, currently 500+ families across all countries where we work.

Media Programs: raising awareness

Factor-H is committed to bring social justice to the communities we serve. A component of our work is to generate film and photographic evidence of the situation of the main HD clusters. In 2017 Factor-H founders organized an audience with Pope Francis at the Vatican. The documentary film DANCING AT THE VATICAN recounts the amazing journey our friends experienced from their towns in South America to Rome.

See it HERE