Welcome
- Dr. Stephen Groft
ICORD President - Dra. Virginia A. Llera
ICORD Chairwoman
The overall aim of the International Conference on Rare Diseases and Orphan Drugs - ICORD 2010 - is to develop constructive international collaborations that will result in diagnostic and treatment advances for patients with rare diseases. This will be the 6th Annual ICORD conference aiming at facilitating international collaboration in the field of rare diseases research, orphan products development, and information development and dissemination activities. ICORD 2010 is being held in conjunction with the events of GEISER Foundation, and the pre-congress educative courses.
The 1st ICORD was held in Stockholm in 2005 and previous meetings have been held in Madrid (2006), Brussels (2007), Washington (2008) and Rome (2009) had the major aim to stimulate constructive international collaboration to catalyze the formation of working groups for these topics with the mission to take steps during the subsequent year in the direction of improved international collaboration.
Traditionally, the meetings host plenary presentations and discussions on various advances made in the field of international collaboration on rare diseases, in program areas such as gaining regulatory approval, linking the academic research community to industry, rare diseases research tools, patient registries and bio-specimen repositories, genetic testing for rare diseases, patient and family needs across the lifespan, recruiting patients for clinical research studies, and expanding geographical borders to include many other nations that were not present at these previous meetings. Time was also provided for the Working Groups to discuss the steps taken during the past year, discuss minor or major advances or improvements, and plan goals and future activities for the up-coming year.
ICORD 2010 will provide individual presentations on Thursday and Friday followed by breakout panels on Friday afternoon with a brief report from each of the panels on Saturday morning. Specific plenary sessions will discuss the following issues:
- Globalization of Rare Diseases Activities and Building on the Previous Experiences of the Countries with Active Programs,
- Establishing Rare Diseases as a Public Health Priority through National Plans and Government Emphasis
- WHO procedures for the International Classification of Diseases and the New Initiative to Provide an Emphasis on Rare Diseases
- Rare Diseases Projects to Link Discoveries from Academic Institutions with the Pharmaceutical, Biotechnology, and Medical Devices Industries;
- Efforts to Link Patients to Research Studies and Treatment Centers of Excellence.
- Model Programs of Patient and Family Care to Provide Better Access to Earlier Diagnosis and Treatments
- Experiences in Introducing and Providing Access To Recently Approved Orphan Products and the Re-Profiling of Approved Products,
- Bioethics in Vulnerable Populations and Access to Appropriate Diagnosis and Treatments,
- Common Health and Social Aspects Between Rare and Neglected Diseases of Interest in Developing Countries.
- Accessibility Needs to Orphan Products for Diagnosis and Treatments in Developing Countries.
- New National Programs Introduced or Planning to be Developed in the Near Future, and
- Rare Diseases and Orphan Product Activities in Latin America and Caribbean Countries.
ICORD 2010 presents an opportunity for interested individuals to volunteer and to continue the suggested activities as part of an established Working Group following the meeting. Several suggestions have been received that will be considered by the various panels in breakout sessions. Each panel will structure their sessions and define what would be the best mechanisms and venues to accomplish their goals in the near and distant future. ICORD 2010 offers to all the opportunity of moving forward together on a global basis. In our vision, this movement may grow slowly but steadily so that it in a few years these activities combined with those of other organizations will facilitate improved access to treatments of rare diseases worldwide and better care for affected patients.
A warm welcome is extended to ICORD 2010 and to Buenos Aires, Argentina!
Welcome to the first ICORD in Latin America.
It is an honor to welcome you to the VI Rare Diseases and Orphan Drugs Conference, ICORD 2010. As a Latin American member of ICORD Executive Board and being the voice of the Continent in this International Organization, it is a great pleasure to call my medical colleagues and researchers, patients’ organizations governmental decision makers, the industry and specialized press to this event, which for the first time will take place in our country.
ICORD 2010 is one of the significant steps in our vision for the region: to join LA&C around this field and to make possible its inclusion into the international scenario.
This goal is coordinate by the “Rosario” program of GEISER Foundation (www.fundaciongeiser.org). This program consists of a chain of events, actions taken at legislation, and the promotion of a very active international participation. As a result, today in many countries of LA&C the concepts and conditions of RD and OD are in a visible stage; now a day, the region is ready to start its participation efforts and progress in an international scenario. ICORD 2010 is an excellent opportunity to build alliances of partnerships and joint work between LA&C initiatives and those countries that lead the development.
With the topic “Global Approaches to Research and Patients Access to Diagnosis, Information and Care, And the Common Issues with Neglected Diseases in Developing Countries”, ICORD offers a great number of spaces for interchange for all the areas and the specific needs of countries like ours.
ICORD is a forum full of opportunities for research and social and scientific development, which integrates the four sectors. The forefront as regards regulatory, political, academicals, industrial and social aspects are going to be present at these events, to deal with a real challenge in health: “The Low Frequency Diseases”.
Taking advantage of this excellent event, local organizations like GEISER and SLADIMER have joined their work planning different spaces around the activities of ICORD 2010 itself, in such a way that professionals and participants will find a week of activities which include: training courses “Pre – Congress” meetings, means of communicating, a special meeting among Latin American countries. Recreational moments and the special event: The GEISER Night and Tango Show, where the contributors in this area will be given recognition.
In a festivity context, due to Argentina’s celebration of the bicentenary of its delivery as a free Nation, Buenos Aires will be prepared to receive you and celebrate. Everything will be arranged to provide the best results. We would like you to join us in this challenge and to accompany you with the best stay.
Yours Sincerely
Virgina Alejandra LLera, MD
ICORD 2010 - Chairwoman
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