Areas of work for Factor-H and associated NGOs 

Factor-H works collaboratively with an extensive network of other non profit organizations across Europe, North and South America. Through collaborative partnerships, Factor-H delivers services and goods, promotes local awareness and reaches families affected by HD living in poverty. All community work is managed locally by Factor-H associates and through the local HD patient associations.

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programs in Latin America - ongoing and in planning

Factor-H works with local HD specialists throughout Latin America to improve access to care for HD families. In Colombia and Venezuela, we help organize medical assistance days for areas with a high prevalence of HD. We also ensure that families with HD can easily contact specialists in their communities and travel to medical centers in capital cities in their regions. We try to improve access to medical care, to improve families’ education about the disease as well as guidance for caregivers.

All of this is done with clinical professionals working in association with Factor-H.

We also facilitate medical assistance and medication access for the communities of San Francisco and Barranquitas in Zulia State, Venezuela, where there is a shortage of medicines. Factor-H signed cooperation agreements with Healing Venezuela (a UK-based NGO) and with Fundación Primeros Auxilios LUZ (Paluz, a medical NGO from Maracaibo) to facilitate access to medications for the entire community. Factor-H together with associated clinicians in Europe acquires medicines that are shipped by Healing Venezuela to Maracaibo. There, Factor-H supports Paluz’s clinicians who regularly visit the HD communities and provide basic and specialized care.

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at-risk Kids & YOUTH Programs

Factor-H has been working for the past four years in providing care and support for at-risk children living in impoverished HD families. Project “Abrazos” was started in Colombia in 2016, where we sponsor over 40 children from the Caribbean region. More recently, the program has expanded to include children from Zulia State in Venezuela. We aim to improve living conditions for the sponsored children and provide them better access to health and education. We also seek to shape a new generation of children at-risk for HD who will be less afraid, more informed and empowered to change their lives and those of their affected relatives.

For more details, please see the “Kids Programs’ Tab

Street art for hd

The Street Art for HD program aims to increase visibility of HD-affected communities in Latin America through street art projects. It also aims to honor the lives and struggles of HD families living in poverty and neglected by society. The program started in Colombia and we are in the process of expanding efforts to other countries and communities.

Planned programs in Zulia State, Venezuela

1. Programa “Recicla (recycling program) San Luis”, Maracaibo. 

Type of program: permanent program.

Objective:  using reclycing practices for the community at large to create earnings opportunities and also provide a cleaner environment for the community. The program will be accompanied by classes to teach best methods and change the local culture.

Who benefits: the community at large.

What’s included: education, concrete community plans, support network which includes local environmental institutions, establishment of recycling. Centers, recycling, transport and commercialization strategies for reclycled goods.

Impact: community of San Luis and municipality.

Co-managed by: FAHUN, Hábitat LUZ, El Zulia Recicla and other environmental institutions in Zulia State. 


2. Program “Mamá Huntington” – San Luis, Maracaibo

Type of program: permanent program.

Objective: to increase likelihood for women to be financially independent and to better contribute to family support, through best practices in sewing, focused on women in the San Luis community.

Who benefits: women of all ages.
What’s included: 
support from local institutions, establishment of strategies for training, community education, and mechanisms for distribution and commercialization of goods made.

Impact: community of San Luis.

Co-managed by: FAHUN, Hábitat LUZ, other local institutions contacted via Habitat LUZ. 


3. Identification of the at-risk population in Zulia State

Type of program: Defined project for 2019, with follow up every 6 months. 

Dr. Lennie Pineda, geneticist and Factor-H member in Maracaibo, will oversee the program implementation. The data will be collected and entered into the electronic database. 

Objective:  To determine and characterize in San Luis and Barranquitas the exact number of people with HD and at risk, as well as to determine socio-economic needs to establish priorities, a necessary requirement for the implementation of future community development programs aimed to eliminate poverty in the at-risk populations. 

What’s included: electronic database implementation, acquisition of data (house by house surveys). Database will be managed by Factor-H and Fundacion Habitat LUZ.

Impact: communities of San Luis and Barranquitas, Estado Zulia
Co-managed by: Factor-H, FAHUN, FHZ, Hábitat LUZ, others. 


4. Program to enhance recreational and sports activities for youth in San Luis and Barranquitas. 

Program type: permanent program.

Objective: to maintain and improve public recreational areas, cultural and sports areas as a way to increase a sense of community for youth, giving them structure and taking them off the streets. The goal is to make sporting and cultural activities (art classes) an instrument to enhance values such as solidarity, equality, sportsmanship and also to fight against discrimination in the communities. 

Who benefits:children and youth (< 21 years of age)
What’s included: 
community infra-structure, organization of cultural and sporting events, etc. 

Impact: San Luis and Barranquitas. 

Co-managed by: FAHUN, FHZ, Hábitat LUZ, others (coaches). 


5. Medical assistance visits in San Luis y Barranquitas. 

Program type: ongoing, with visits planned every 3 months. 

Objective:  Medical attention to patients with HD during special visits every 3 months. Continues the work already ongoing with support from Factor-H, Healing Venezuela (ships medications from European donations) and Fundacion primeros auxilios LUZ (PALUZ), a medical NGO with whom we have a collaborative agreement.

Who benefits: HD affected patients.
What’s included: 
 Education, diagnoses, medical oversight, both general and HD relevant physician support, delivery of medicines.

Impact: San Luis and Barranquitas

Co-managed by: PALUZ (Fundacion Primeros Auxilios LUZ), FAHUN, FHZ, Hábitat LUZ, others. 


6. Program to increase the knowledge about HD at an institutional level in Zulia State 

Program type: permanent.
Objective: To increase education and public awareness about HD in medical centers (public and private) and the Zulia State population at large. 

Who benefits: Venezuelan community at large, to eliminate stigma and enhance institutional support.

What’s included: outreach effort to educate via visits to hospitals and institutions, give talks about HD, share audio-visual and written information about the disease, and design of a strategy for increasing awareness locally.

Impact: general public.
Co-managed by: Factor-H, PALUZ, FAHUN, FHZ, Hábitat LUZ, others. 


7. Project “Burial”

 Program type: permanent.
Objective: To finance burial for HD individuals whose families can’t afford to buy caskets and pay for burial services

Who benefits: HD families in San Luis and Barranquitas

Impact: community at large

Co-managed by: Factor-H, FAHUN, FHZ, Hábitat LUZ, others.