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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)…
Start of 'Proyecto Abrazos' - The Children's Project

Start of 'Proyecto Abrazos' - The Children's Project

Sábanas de San Angel – this past April. We pulled in with Fermín’s car loaded with food, hammocks, and clothes. The scenery was arid – this region has suffered from a profound drought for a while now, and everything is dried up. The Cañahuate trees the only bright color amidst…
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…
New campaign to sponsor kids growing up in vulnerable HD families in Colombia

New campaign to sponsor kids growing up in vulnerable HD families in Colombia

Today we started a new campaign to help children living with HD in Colombia. see attached link please and spread the word! to Donate, please click here for Project Abrazos for HD Also see an explanation of the program. Thank you and I hope that together we can help these…
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…

Upcoming visit to Colombia in April

Our next trip to visit our Colombian friends and HD family is happening soon- from April 10-24, 2016. We are planning on going to Choco, Santa Marta, Juan de Acosta, Barranquilla, Medellin and Bogota. This time around, our friend and English journalist Dara Mohammadi (see his page!) from the prestigious…

Campaign 'de Abrazos' - 'Hugs' to benefit the Colombian patients. Go to you tube and donate!

AcolpEH just launched a new campaign called ‘Hugs’ – to raise funding towards the benefit of Colombian families, as well as to start fundraising to build a care center for the affected families https://www.youtube.com/watch?v=wABsvfEPT2E Please go and donate- right now the video is in Spanish but translation will come soon…
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