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.
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.
Factor-H organizes a variety of educational seminars, in person or online, both to families and health professionals. In 2018, we organized the first HD conference for Latin America where we brought together scientists, clinicians, at-risk youth, social workers, and patient associations working to improve the quality of life of HD families. By spending time together and participating in social activities, the conference aims to break down barriers across countries, and across disciplines. We also seek to bring together affected families with professional scientists and clinicians.
There are articles in the NEWS section, including links to conferences and articles written by the Factor-H team
READ ABOUT THE 2018 CONFERENCE
Factor-H provides legal assistance to all HD families in Colombia, to assist them with navigating the complex landscape of accessing medical benefits & medications, which can be difficult to obtain from insurance companies in Colombia. In 2022, Factor-H hired Brayan Hernández to manage this program to represent the needs of the patients and their families. He has been very successful in ensuring that patients get the medications they need, as well as ensuring that late stage patients get adequate care, whenever possible.
We also started a formal collaboration with Area Andina University to provide legal support by specialists working alongside Brayan. 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.
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.
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.
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
On September 3, 2023, at The Lodge Room in Los Angeles, about 200 people gathered in an evening of solidarity with HD families living in
Miner is a folk-rock, family band based in Los Angeles, formed by husband and wife Justin & Kate Miner along with Justin’s brother Jeremy Miner.
Ruth Blanco, president of the HD association in Spain & coordination of the European Huntington’s (EHA) program ‘Moving Forward‘ for Spain, conducted a series of
Factor-H is a registered 501-(c)3 non-profit foundation in the United States (EIN 82-5395108)
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