To the Rhythm of the veda - Al ritmo de la veda

To the Rhythm of the veda - Al ritmo de la veda

At first, going to Barranquitas felt like stepping into the world of Mad Max. The heat, the dust, the precariousness, the sense that everything could fall apart at any moment. But over time, something shifted. Maybe it was accepting my mission—to help and inspire. Maybe it was realizing that in…
Factor-H is Awarded the 2024 Amgen Prize!

Factor-H is Awarded the 2024 Amgen Prize!

Factor-H 'La Luz' Caregivers program wins the 2024 Amgen/MIT Solve award at the Concordia Summit

We are extremely honored and humbled by this award, which will fund our caregivers support program in Venezuela. The prize money will be used to fund a caregivers’ training program, support out ongoing psychological and support strategies for caregivers, bring caregiver equipment for patient care, and build facilities for patients and caregivers in Barranquitas. In addition, we will work to create a free phone-based application where informal caregivers throughout Latin America can access useful information in a way that is visual, simple and accesible to all families in any socio-economic context.

On September 24th, Ignacio Muñoz-Sanjuán presented the proposal in a live Q&A session with the judges at the Concordia Summit in NYC. Factor-H was one of the 5 finalists teams selected out of 90 applicants for this prestigious award. You can see the entire event presentations in the YouTube video below. All of the proposals submitted were of the highest caliber, and we are honored to have been selected as the only winner of this Prize. 

The prize winner was announced on stage live on September 25th, and you can see the video of our acceptance speech below. I was lucky to have Marina from the Venezuelan team with me at the event, particularly during the very emotional moment when we were notified we had won the Prize.

Spending time with the international panel of judges, with the MIT Solve and Amgen organizers, and the other finalists was an experience we will never forget. All of them are remarkable human beings whose work benefit countless people around the world suffering from rare disorders.

This award is a recognition of the hard and innovative work of entire Factor-H team for the benefit of Latin American HD families. We are extremely fortunate to count on an incredible team of dedicated professionals and volunteers who make our programs function in very difficult circumstances. But most of all, this award is dedicated to the families we serve, and whose suffering is no longer being ignored. We are proud to serve and work with them for the benefit of HD patients in Latin America.

We want to thank all our supporters and donors – you have made this possible!

Watch the Prize announcement and the acceptance speeches from Ignacio Muñoz-Sanjuan and Marina Kauffman Watch Ignacio Muñoz-Sanjuán present at the Concordia Summit in NYC Watch the presentations from the five finalists for…
Factor-H nominated for the 2024 Amgen Prize

Factor-H nominated for the 2024 Amgen Prize

We are honored to be 1 of 5 finalist nonprofit organizations being nominated for this prestigious award, selected out of 90 applicant organizations. The award of US$150,000 will be given to one of the five finalists. 

The Amgen Prize 2024 rewards innovative in rare disease patient care. 

Factor-H submitted an application to fund our caregivers’ support program for the Venezuelan communities. The program is led by Alex Fisher who has become an integral member of Factor-H, working closely with the Habitat LUZ team in Venezuela. 

The Amgen Prize seeks innovative solutions from nonprofit organizations and NGOs around the world that improve the journey of patients with rare diseases, from diagnosis to treatment and holistic care. The winner will be announced on the East Stage at the Concordia Summit in NYC on September 25, 2024. The agenda for the 14th annual Concordia Summit can be found HERE. The theme for the Summit is Navigating a New Era.

Below you can find the pitch video Ignacio Muñoz-Sanjuan presented for the Amgen Prize, and the trailer of our new documentary about the lives of the HD informal caregivers in Barranquitas, produced and directed by our colleague Gindel Delgado from Caracas, Venezuela. 

The documentary will be screened at the EHDN conference this week and will premier in Los Angeles on October 17, 2024.

Caregivers Training Program (In person and App)

Caregivers Training Program (In person and App)

Factor-H has established formal collaborations with the University of Antioquia and the University of Medellín in Medellín (State of Antioquia), and the University Metropolitana (Barranquilla, State of Atlántico) to assist caregivers and the patients we directly support in Colombia (currently >130 families). Our employees work only in defined regions of…
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