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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,…
A WEEK-LONG GATHERING OF FAMILIES, PATIENT ASSOCIATIONS, AT-RISK YOUTH, CLINICIANS AND SCIENTISTS IN COLOMBIA, July 4-11, 2018

A WEEK-LONG GATHERING OF FAMILIES, PATIENT ASSOCIATIONS, AT-RISK YOUTH, CLINICIANS AND SCIENTISTS IN COLOMBIA, July 4-11, 2018

Factor-H organized a series of events beginning on July 4 in Barranquilla, Colombia, with the first gathering of at-risk HD youth from 5 Latin American countries, co-organized with HDYO. The meeting was a first step in identifying and training a group of young people from South America, to extend outreach…
Meeting with Pope Francis at the Vatican May 18, 2017

Meeting with Pope Francis at the Vatican May 18, 2017

Factor-H is pleased to announce a private audience with Pope Francis at the Vatican on May 18, 2017 (11am) to honor Latin American families affected by HD
Roberto

Roberto

I met Roberto and his family when I visited them in April in Juan de Acosta, in the Atlántico State of the Colombian Caribbean coast. Juan de Acosta was considered the second largest HD cluster in the world, although many affected families have left the town in the recent years.…
New article about Colombia and Factor-H in the Lancet Neurology

New article about Colombia and Factor-H in the Lancet Neurology

Dara Mohammadi just wrote a final piece from the trip we took together to Colombia in April 2016. You can find the pdf of the article here: HD Colombia Lancet Also read about Enroll-HD efforts here: http://www.enroll-hd.org/ Please note that even though efforts to initiate Enroll-HD are underway in Colombia,…
Article by Monica Roa - a lawyer working with Factor-H to protect the rights of the patients in Colombia

Article by Monica Roa - a lawyer working with Factor-H to protect the rights of the patients in Colombia

A couple of months ago, I met Monica Roa in Washington DC to discus whether we could team up to deal with the issues facing many of the Colombian families – the lack of institutional and government support, the refusal by many of the insurance companies (called EPS in Colombia)…
Colombia April 2016 - Part 3: Stories from Juan de Acosta

Colombia April 2016 - Part 3: Stories from Juan de Acosta

My first – unexpected – science lecture for medical students in Barranquilla, Colombia Barranquilla is close to Juan de Acosta, the second largest cluster of HD patients in the world (to our knowledge). The prevalence was reported quite a few years ago by Dr. Daza in one of the few…
Colombia Trip April 2016 - Part 2

Colombia Trip April 2016 - Part 2

When we finally got our flight to Bogota from Quibdo, it was late at night. the plane was delayed and we did not take off until after 9pm. we landed around 11pm and we had to be back at the airport at 8am for the flight to Santa Marta. At…
Choco, Colombia, April 11-12. PART 1 of our Colombian Visit

Choco, Colombia, April 11-12. PART 1 of our Colombian Visit

Our first leg of the trip to see HD families took us to a place I had never been before. Choco is an area of Colombia bordering Panama on the North and the Amazonian region in the South. Choco has borders with both the Pacific and the Atlantic oceans, and…

Primer Simposio de Enfermedad de Parkinson, Huntington y Enfermedades Huérfanas

  Its almost time to visit Colombia! Here is the link to the meeting we will be participating it at the end of the 2 week trip to visit the Colombian Communities. I hope we will have a positive impact for the patients, their families, the physicians and the regulatory…
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