2025 Gratitude Day - a summary of the events in Venezuela

2025 Gratitude Day - a summary of the events in Venezuela

Gratitude Day took place on March 23rd, 2025 and culminated a week of events in Venezuela to honor the contributions of the Venezuelan families to the advancement of science and medicine. Factor-H, working alongside Habitat LUZ, volunteers from the community and health professionals, hosted a series of events ranging from…
Gratitude Day 2025

Gratitude Day 2025

“Gratitude Day is a way to honor the collaboration of HD families with clinicians and scientists, which started with the efforts to identify the Huntington’s disease gene in the 1980s, and that continues to these days through various efforts around the world to find treatments for the disease”March 23rd is…
Factor-H supports the education of children at risk for Huntington's disease

Factor-H supports the education of children at risk for Huntington's disease

The Kids Program (or Program Abrazos) started in Colombia in 2013, after Ignacio visited HD families in the rural region of San Angel, in Magdalena State. I remember meeting a kid, Olver, who had been abandoned by his parents, and was living with his grandmother in a small ranch without…
A reflection: Factor-H co-founder centers humanity to serve communities living with Huntington’s disease

A reflection: Factor-H co-founder centers humanity to serve communities living with Huntington’s disease

The December issue of the Moving Along magazine of the Movement Disorder Society published a reflection article about the scientific and humanitarian trajectory of Factor-H founder, Ignacio Muñoz-Sanjuan. The article was written in response to the Public Service Award given to Ignacio in September 2024, for the work Factor-H has…
Factor-H President is interviewed for the Rare Disease Advisor

Factor-H President is interviewed for the Rare Disease Advisor

On November 5th, Larry Luxner, journalist and senior correspondent for the Rare Disease Advisor network, interviewed Dr. Ignacio Muñoz-Sanjuan about Factor-H work in Latin America. Larry also spoke with Marina Kauffman who leads Factor-H work in Venezuela. In the accompanying podcast, Ignacio shares his journey from 2012 when he launched…
El Programa de Asistencia Legal en Colombia

El Programa de Asistencia Legal en Colombia

Factor-H ofrece un servicio de asistencia legal gratuita en Colombia, con el único objetivo de facilitar el acceso a los servicios, medicamentos e insumos que el Estado colombiano asegura a todos los pacientes afectados por la enfermedad de Huntington. Factor-H tiene como objetivo ayudar a todas las familias con EH…
Factor-H hosts the US Premiere of two HD documentary films

Factor-H hosts the US Premiere of two HD documentary films

On November 07, 2024, Factor-H will host a fundraising event in Los Angeles to support our ongoing programs in Latin America.Factor-H is proud to present the US premiere for two documentary films about Huntington’s disease – The Light (The story of the Informal Caregivers for Huntington’s patients in Barranquitas, Venezuela, by Gindel…
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…
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…
Uniqure's AMT-130 Phase 1/2 trial - a reflection

Uniqure's AMT-130 Phase 1/2 trial - a reflection

Yesterday, Uniqure reported on the 24-month results of their Phase 1/2 clinical trial with AMT-130, a viral gene therapy trial for HTT lowering for the treatment of HD. See the links to the press release and investor call slides. I wanted to review some aspects of the claims made by Uniqure, and…
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