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 the project Factor-H after visiting […]
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 a navegar el complejo panorama […]
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 Delgado) and The Present (Dimitri Poffe’s […]
Factor-H President receives the 2024 Public Service Award from the MDS
What a week it has been! Factor-H is again recognized for its public service to underserved Latin American HD families at the International Congress of the Movement Disorder Society (MDS), the largest international clinical organization dedicated to clinical practice for movement disorders. More than 4500 people from 100 countries are attending the conference. We are […]
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 […]
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’ […]
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 put them in the […]
State of Therapeutic Programs
From a gene mutation to a lethal disease HD is caused by a single mutation in a region of the HTT gene, located at the beginning of the gene (in exon 1), which contains a repeat sequence comprised of CAG repeats; in the normal range, people have between 17-22 repeats on average; in HD individuals, […]
Reflections on a visit to Zulia
Team work and scientific education Every year, Factor-H Vice President Roger Cachope and I visit the Colombian & Venezuelan communities at least once, and over time we have developed a close relationship with many of the HD families we support. These visits are particularly important for me, because they allow me to see first-hand where […]
The Legal Assistance program in Colombia
Factor-H offers a free-of-charge legal assistance service in Colombia, with the sole objective of facilitating access to the services, medicines and supplies that the Colombian State ensures to all patients affected by Huntington’s disease. Factor-H aims to assist all HD families with navigating the complex landscape of accessing medical benefits & medications, which often can […]
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