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Mrs Michelle Muscat delivering opening speech at the Conference on the Development and Access of Medicines for Rare Diseases – 21 March 2017

Project Description

Malta hosted a Conference on the Development and Access of Medicines for Rare Diseases at The Grandmaster’s Palace, Valletta, Malta on 21 March 2017, an initiative of Mrs Michelle Muscat, Spouse of the Prime Minister, Honorary Patron of EURORDIS, Chairperson of The Marigold Foundation, and President of The National Alliance for Rare Diseases Support – Malta.

Minister for Social Dialogue, Consumer Affairs and Civil Liberties, Helena Dalli explained how there is a major interest for collaboration between researchers in Europe to improve access for rare disease therapies. Minister Dalli added that specific collaboration platforms have firmly demonstrated the viability and potential for success for voluntary approaches, which can complement and strengthen national competences. Minister Dalli welcomed the proposal for voluntary cooperation between EU national health care systems on the procurement of medicines for expensive rare disease therapies. Minister Dalli said that joint procurement of innovative medicines with other Member States increase bargaining power in price negotiations, while allowing to address the unmet medical needs of small patient populations. Minister Dalli stated, “It is a privilege and honour, and it humbles us all to witness that this small country is spearheading such awareness on rare diseases.”

Minister for Health, Mr Chris Fearne said that on the issue of rare diseases, EU countries need to work together to provide the best services to European citizens. Minister Fearne said, “We cannot work in silos, the EU can rise to this challenge. We need to demonstrate that the EU offers added value to its citizens but providing care beyond what individual Member States care to offer.” Minister Fearne said that the introduction of the European Reference Network is an important first right step in the right direction. Minister Fearne said, “Countries are forming groupings to have a joint voice on procurement of new medicines in the market. The Benelux states are one group and Eastern Europe are forming another group. South European/Mediterranean states need to have a similar voice”. Minister Fearne said that Malta will be hosting a conference in May that will bring together major pharma companies and health ministries to discuss pricing.

Mrs Michelle Muscat, President of The National Alliance for Rare Diseases Support – Malta said, “Rare diseases are even rarer on island states such as Malta so it is imperative that the voice of these people are heard and even more important that these people do not feel isolated, but supported in ways that makes their life better”.

Raising the issue of Rare Diseases on a European Platform was one of the aims of the Malta Presidency, echoing the need of patients’ organizations around Europe through EURORDIS, the Voice of Rare Diseases Patients in Europe.

The conference was attended by delegates from the Committee for Orphan Medicinal Products (COMP) and EURORDIS and is being supported by The National Alliance for Rare Diseases Support – Malta, The Marigold Foundation, University of Malta, RD-Action, E-Rare, the Innovative Medicines Initiative, together with the Malta Medicines Authority.