Gratitude Day – Video interviews from Spain
June 4, 2023
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
we
(What we do together)
WE, “we” is what we do together. Not just “us”, not just “them”, not just “you”… but WE.
We can make dreams come true. Small dreams or big, huge ones, they all matter. “We” – together – develop “Health & Disease Management” programs, “Youth” programs, “Community Development” programs, and “Data Collection & Advocacy” activities. “We” have no limits. “We” hold the power of togetherness, the qualities of what it means to be a society of human beings.
Explore below a brief explanation of each area or jump to the links above to those areas that fit your interests the most!
Health & disease management
Factor-H aims to provide adequate and holistic health assistance to all families affected by HD in our communities. Assistance takes place through contracts with specialized clinicians, by providing needed medications, and through regular community-centered medical days to provide specialized and general medicine support for the communities. Another aspect of our work is to enhance access to genetic counseling and testing.
Youth
Huntington’s disease is inherited. Every child of an affected person has a 50% chance of inheriting the mutation and develop the disease as well. Factor-H works to protect the rights of children and adolescents living with HD. We aim to bring opportunities for these children living in conditions of extreme vulnerability, through education, basic assistance, and social activities.
Community Development
The communities we serve suffer from inadequate infrastructure. Many families live without running water or electricity, and have little social protection. Our goals include improving their lives via education and small business loans to help them evade poverty. We hope to build and manage day centers for HD families across the largest clusters in the world, where we can expand our work in the communities we serve.
Data Collection & Advocacy
A critical aspect of our work is the identification of families affected or at-risk for HD, so that we can better prioritize aid and act more effectively to raise awareness at a local, national and International level. By working closely with affiliated universities and other non-profit institutions, we hope to advocate effectively for HD families. Through seminars, articles, conferences, and an effective social policy, we believe we can bring additional support to enable our goals.
Some news about what we do together
GRATITUDE DAY 2023
April 23, 2023
Gratitude Day 2023 was a success! The gratitude day campaign was adopted by many families, patient associations, friends of HD families, clinicians and scientists working
Gratitude Day: Celebrating the 30th anniversary of the discovery of the huntingtin gene
March 19, 2023
30 years ago, on March 23, a landmark Cell article was published, describing that the mutation in the gene responsible for Huntington’s disease had been
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