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Gratitude day 2024 - The Candle Light Vigil

Gratitude day 2024 - The Candle Light Vigil

The week of Gratitude day, 23rd of March, has seen an inclusion of community events inside the HD communities of San Luis and Barranquitas. The celebration of the partnership between scientists and HD families has taken an unexpected turn this year and also became a celebration of the history of…
2022HDLatam Conferences Day 2-C5: Marina González de Kaufman

2022HDLatam Conferences Day 2-C5: Marina González de Kaufman

From October 19 to 21, Factor-h organized in Barranquilla, Colombia, the 2022 Huntington Latin American Conference with the presence of 35 speakers, among them scientists, researchers, experts in different health fields, HD associations, patients, and families. In her conference on October 20th, architect Marina González de Kaufman, President of Fundación…
Venezuela: 2022 Holidays

Venezuela: 2022 Holidays

Today, Monday December 26, 2022, was a beautiful day in San Luis, in Maracaibo. Everything started early today … the work of shopping for the Christmas events, packing, and ordering everything to get it organized for all the children we sponsor. Then, we packed our truck, filled to the brim…
32 volunteers working back in Barranquitas!

32 volunteers working back in Barranquitas!

On Saturday May 21, 52 volunteers from Factor-H where in Maracaibo, Venezuela, giving medical assistant to kids and patients with Huntington Disease.
CASA DIGNIDAD - a day center for Barranquitas

CASA DIGNIDAD - a day center for Barranquitas

C.A.S.A DIGNIDAD – A HOUSE FOR ALL by Marina Kauffman, president of Fundación Habitat LUZ The first time I went to Barranquitas, I was impressed by the beauty of its surroundings. A hidden place, almost untouched, to which an unfinished path leads but full of visual surprises. To see lagoons…
Meet Brayan - the video

Meet Brayan - the video

<br /> A few months ago I wrote a story about meeting Brayan, a young kid at risk for HD from Barranquitas, Venezuela (see blog post “Reflections on instilling a sense of hope”). Together with colleagues Matt Rota (https://www.mattrotasart.com) and Nicanor Cardeñosa, we put together a narrated illustrated story of…
In Solidarity and Gratitude

In Solidarity and Gratitude

Helping in the time of COVID-19 We all know that the most vulnerable sectors of any society are always the worst hit in times of crisis. The arrival of the novel coronavirus has isolated our communities even further. The most vulnerable sectors of any society are always the worst-hot in times of…
Factor-H and Fundación Habitat LUZ from Maracaibo start working together

Factor-H and Fundación Habitat LUZ from Maracaibo start working together

MEETING BETWEEN THE MARACAIBO PATIENT ASSOCIATIONS, FACTOR-H AND FUNDACION HABITAT LUZ … THE BEGINNING OF OUR EFFORTS TO BRING CHANGE TO THE COMMUNITIES MOST AFFECTED BY HD IN THE WORLDHappy New Year 2018!On Monday December 11th, we held an all-day meeting in the offices of Fundacion Habitat Luz, a Maracaibo,…

BRINGING MEDICAL SUPPORT TO HD CLUSTERS IN VENEZUELA

During the last couple of months, we have managed to reach a lot of patients in both San Luis and Barranquitas, the two largest communities with HD in the world. We conducted two medical assistance visits with the local HD foundations and the medical foundation Primero Auxilios. This is really…

Barranquitas, Maracaibo

Population: 6.264 in census – Regional Health System. 76  HD families identified, 13 families with more than 1 member affected (total current HD manifest individuals = 98). A full census is ongoing through local patient association (Avenhun Zulia). estimated prevalence for at-risk individuals is 1-5% of the total population. Needs:…
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