Portal de Totana
www.portaldetotana.com
The President of the Spanish Federation for Rare Diseases (FEDER) and the Latin American Alliance for Rare Diseases (Aliber) together with representatives of OMER, visited the stand of the Venezuelan Association of Patients with Lysosomal Diseases and the Civil Partnership Humberto Da Silva
More than 16 rare diseases associations attended the First International Conference on Uncommon Diseases in Mexico.
Juan Carrion, President and Chairman of the ERDF I Iberoamericana Rare Disease Alliance, along with representatives of OMER used to visit the stand of the Venezuelan Association of Patients with Lysosomal Diseases and Humberto Da Silva Civil Association.
Joining them knew the lines of work of Venezuela and conveyed a message of support and recognition for their work associations.
In addition, the Latino World Marfan Association was also present and he reminded Javier Guerra and Gloria Pino, drivers of the Alliance.
Next to them, the following associations were present, Fundacion Andrea West of Care for children with Developmental Disorders and Tuberous Sclerosis, The Hereditary Angioedema, United Group of Leukemia, Unit and development of Brothers with Hemophilia, Renal Tubular Acidosis Méxicana Jalisco Fabry Group Mexico, National Williams Syndrome Association, MPSJAJAX, a new sun Institute for Down children, Muscular Dystrophy Association, Asociacion Mexicana Spinal Muscular Dystrophy, Cystic Fibrosis West, Iron Kids, Mexican Association of Guidance and Support and fighting against scleroderma, Mexican Association of phenylketonuria.
Source: FEDER
Privacy policy
- Legal notice
- Cookies