10.04.2014

Stem cells: patient organizations create a network against misleading treatments

The Regenerative Medicine and Cell Therapy Advisory Commission of the Ministry of Science on its own initiative created a network to prevent patients from becoming victims of unapproved treatments.

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Stem cells: patient organizations create a network against misleading treatments

Dissemination of quality information about approved stem cell treatments.

The Ministry of Science, Technology and Productive Innovation, through its Regenerative Medicine and Cell Therapy Advisory Commission, fostered the creation of the Argentinean Patients Network for Advanced Therapies (Red APTA). The Network coordinated by its own commission, includes more than 30 associations of patients suffering from different diseases and is focused on providing genuine and responsible information on scientific advances in health care to patients and the community in general.

Among its main objectives, the APTA Network provides access to information; raises awareness of the stage of cell therapies to avoid patients and vulnerable populations be misled; establishes links with research groups, funding agencies, regulatory bodies, international patient advocacy groups and other relevant stakeholders; and strengthen the voice of patients in the field of advanced therapies.

The creation of the network as the first association for the protection of patients related to stem cell therapies in Argentina was advised by the Genetics Policy Institute (GPI), a non-governmental organization based in the United States of America and with a long background in defending the rights of patients. One of the first actions of the network involved the participation of one of its representatives in the Stem Cells World Congress 2013, held in San Diego, United States of America, to promote an overview of patient advocacy and exchange experiences in Argentina related to medicine and science-based treatments.

Red APTA Members:
• Asociación Argentina de Esclerodermia y Raynaud (AADEYR)
• Asociación Argentina de Neurofibromatosis (AANF)
• Asociación de Apoyo al Paciente con Enfermedad de Wilson-Argentina (AAPEWA)
• Asociación de Ayuda al Paciente con Inmunodeficiencia Primaria (AAPIDP)
• Asociación Civil Enfermedad de Parkinson (ACEPAR)
• Asociación Distrofia Muscular para Enfermos Neuromusculares (ADM)
• Asociación Civil para el Enfermo de Psoriasis (AEPSO)
• Asociación Argentina de Angioedema Hereditario (AHE ARGENTINA)
• Asociación Leucemia Mieloide Argentina (ALMA)
• Asociación Lucha contra el Mal de Alzheimer y Alteraciones semejantes en la Argentina (ALMA)
• Asociación para el Apoyo a los Enfermos de Huntington (APAEH)
• Asociación Pro Ayuda a No Videntes (APANOVI)
• Asociación para Espina Bífida e Hidrocefalia (APEBI)
• Asociación Solidaria de Insuficientes Renales (ASIR)
• Asociación de Síndrome de Rett de Argentina (ASIRA)
• Angelito déficit de L-Carnitina (ASOCIACIÓN ANGELITO)
• Asociación Civil de Ataxias Argentinas (ATAR)
• Asociación y Unión de Padres de Niños y Adolescentes con Trastornos Generalizados del Desarrollo (AUPA)
• Asociación Civil Creciendo (CRECIENDO)
• Asociación Argentina de Esclerosis Lateral Amiotrófica (ELA)
• Federación Argentina de Enfermedades Poco Frecuentes (FADEPOF)
• Familias Atrofia Muscular Espinal Argentina (Familias AME Argentina)
• Fundación Debra Argentina por la Epidermolisis Bullosa (DEBRA)
• Fundación FOP para la promoción de la investigación y el mejoramiento de las personas con Fibrodisplasia Osificante Progresiva (FUNDACIÓN FOP)
• Fundación Argentina de Talasemia (FUNDATAL)
• Grupo de Pacientes con Ataxia (GPATAX)
• Grupo de Ayuda Mutua para pacientes con Artritis Remautoidea (GRUPO AMAR)
• Fundación Más Vida - Fundación de Crohn & Colitis Ulcerosa (MÁS VIDA)
• Red Ehlers-Danlos Argentina (RED EDA)
• Red Nacional de Investigación y Educación de Argentina (RETINA ARGENTINA)
• Rett Argentina (RETT ARGENTINA Asociación del Síndrome de Rett
• Asociación de Pacientes y Padres de Niños con Enfermedad de Stargardt (STARGARDT APNES)

For more inquiries and information please send an e-mail to Red APTAto The Regenerative Medicine and Cell Therapy Advisory Commission of the Ministry of Science or click here.

The Regenerative Medicine and Cell Therapy Advisory Commission of the Ministry of Science, promotes the dissemination of quality information about approved stem cell treatments, in order to avoid exposure of patients to experimental interventions and potentially dangerous to their health. It is composed of the most prestigious institutions of the country.

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Dissemination of quality information about approved stem cell treatments.

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