Published on May 12, 2009 by GEISER Foundation
Welcome to the GHG SER, Group Liaison and Support Research on Rare Diseases in Latin America.
Living with a rare disease is a challenge and a great burden for the patient and his family, but since 2002 affected people in our land are not alone. SER para hacer realidad nuestra esperanza. SER GHG been working to change this reality and everyday more people, organizations, practitioners, researchers, companies and government officials are working with SER GEI to realize our hope. Organizations and rare disease patients are tireless warriors who have made their pain and today a ensñanza example of resilience, a living hope that works in Latin America for answers.
Join us.
Published on September 4, 2009 by GEISER Foundation
Our Information Service for Rare Disorders donated by Latina SA and coordination and responsibility of Dr. Virginia Llera, has been a successful lawsuit. Therefore if you want to access it and the lines are busy please keep trying to write to or call fundgeiser@yahoo.com.ar 011-15-5503-9901.
In all cases in the shortest time possible will have our answer.
Please connect and are in contact.
Published on September 4, 2009 by GEISER Foundation
The World Congress on international cooperation and policies for rare diseases and orphan products will be held in Buenos Aires, Argentina on 18, 19 and March 20, 2010.
The Sixth International Conference on Rare Diseases and Orphan Drugs ICORD 2010, will be convened for the first time in the Southern Hemisphere according to the progress that globalization has generated in the development of activities related to research on rare diseases and orphan products .
Are called to participate in this unique forum for individuals and patient organizations, researchers, academics, pharmaceutical, medical, biotechnology and policy makers in government.
The specialized courses and open meetings with key people in this area will be developed during the previous days - 16 and 17 March. There will also be opportunity to discuss and learn about the initiatives of Latin America and the Caribbean - ER2010LA - in rare diseases and orphan products.
By their nature, rare diseases may be investigated and handled in a better way within the international context, and this is the opportunity to join the discussion of ideas and global needs of the community of rare diseases.
The economic impact of introducing new therapies, and how cooperative strategies can influence the cost of these treatments will be a special case, so is the information and needs to provide the patients and their families as well as specific situations in the world development in terms of disease management that are rare in developed countries but are neglected in environments where diseases occur more frequently.
SER GEI Foundation, the first NGO umbrella for rare diseases in Latin America & the Caribbean receive and forward proposals.
For more information, please contactáctese with fundgeiser@yahoo.com.ar
Published on October 12, 2009 by GEISER Foundation
BRAZIL: SOBRAO SYMPOSIUM WITH PARTICIPATION OF ORGANIZATIONS OF PATIENTS.
By Dr. Emilio Roldan
Last October 3rd, 2009, in the context of 3rd Brazilian Congress on Osteoporosis SOBRAO and 8th Iberoamerican Congress of Osteology, and Mineral Metabolism (SIBOMM), developed a symposium on "Continuing education in Osteoporosis: recommendations for patients" with the participation of Dr. Helenice Teizeira Alves Goncalves, Ministry of Health of Brazil, Dr Virginia A Llera GEISER Foundation, Ms. Suely Roitman of the National Federation of Patients from Brazil and Dr. Rubem Lederman of the International Osteoporosis Foundation. Coordinated by Dr. Joao Francisco Marques Netto and Muhib Adil Samara, Univ of Campinhas, Sao Paulo, Brazil.
The symposium was a model of interaction between universities, governments and associations of patients, between this case represents a rare and prevalent diseases. Dr. Llera focused common problems to the attention of those with rare diseases and the importance of the suspicion of them.
This symposium has opened the door to include the problem of ER in specific international scientific societies. A similar interaction symposia are planned to replicate in Cordoba, Argentina in 2010, and in Madrid, Spain in 2011 as a result of the presence and work in academia looking GEISER inserting the topic of rare diseases in nuclei education of professionals.
