International Cooperation —
a key to оvercoming сhallenges in the sphere of orphan diseases
Cooperation between countries is a powerful tool in combatting rare diseases.
Putting together resources, knowledge and experience we can significantly accelerate development of new drugs, improve diagnostics and therapy as well as to make an accessible medical; aid to patients with rare diseases a reality.
Putting together resources, knowledge and experience we can significantly accelerate development of new drugs, improve diagnostics and therapy as well as to make an accessible medical; aid to patients with rare diseases a reality.
- Leading organizations
- Research centers
- Patient communities
- Charity funds
- Payers
- Regulators
We are actively building and strengthening international ties around the world with:
Our goal:
to make an accessible high quality medical aid a reality for each patient with a rare disease.
We do this by joining forces, sharing knowledge and experience, coordinating clinical trials, introducing innovational methods of treatment and effective organizational solutions
We do this by joining forces, sharing knowledge and experience, coordinating clinical trials, introducing innovational methods of treatment and effective organizational solutions
Through international cooperation
we can significantly speed up the development of new medicines,
arrange drug supply systems more efficiently, and make advanced therapies available to every patient with a rare disease
we can significantly speed up the development of new medicines,
arrange drug supply systems more efficiently, and make advanced therapies available to every patient with a rare disease
Our Association organizes and actively participates in international conferences, seminars and forums, bringing together experts from different fields to discuss the latest advances and challenges in the diagnosis and treatment of orphan diseases.
Raises issues of ensuring accessibility of high quality medical care and efficient drug supply.
We aim to become a platform for a constructive international dialog of experts on orphan diseases, bringing together specialists from the EAEU, CIS, BRICS, Middle East, North Africa and other regions.
KEY AREAS OF ACTIVITY:
RWE/RWD: joint collection and analysis of real-world data to guide decision-making
Pooling together efforts in research: jointly conducting clinical trials, including cooperative studies
Cross-country cooperation between foundations and patient organizations: enabling environment for productive interaction
Harmonization of legislation: development of a legal framework for the drug supply to patients with rare diseases within the EAEU, CIS, including unification of regulatory procedures for drug registration
Collaboration in the field of evidence-based medicine: joint development of clinical guidelines for the treatment of orphan diseases
Financing and accessibility: exchange of experience and best practices in organizing drug supply and treatment funding in different countries, development of recommendations to enhance accessibility of innovative drug therapies
The Association's goal is to ensure accessibility of treatment for patients with orphan diseases.
With this in view, we will set up working groups uniting experts from CIS countries, who will conduct an in-depth analysis of problems in the sphere of providing treatment for orphan diseases, prepare relevant proposals, recommendations and analytical reports aimed at improving the situation.
With this in view, we will set up working groups uniting experts from CIS countries, who will conduct an in-depth analysis of problems in the sphere of providing treatment for orphan diseases, prepare relevant proposals, recommendations and analytical reports aimed at improving the situation.
Contact us:
Musina Nuriya Zagitovna
Director of International Cooperation NARDE
Director of International Cooperation NARDE
E-mail: nm@naerez.ru
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