PRESS RELEASE BY THE MINISTRY FOR SOCIAL DIALOGUE, CONSUMER AFFAIRS AND CIVIL LIBERTIES AND THE MINISTRY FOR HEALTH – Spearheading awareness on rare diseases

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.

Dr 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.

Dr 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 disease, EU countries need to work together to provide the best services to European citizens.

“We cannot work in silos, the EU can rise to this challenge. We need to demonsate that the EU offers added value to its citizens but providing care beyond what individual Member States care to offer ,” said Mr Fearne. He said that the introduction of the European Reference Network is an important first right step in the right direction.

Mr Fearne said that countries are forming groups 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,” said Mr Fearne.

The Minister 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, spouse of Prime Minister and Chair of the National Alliance for Rare Diseases Support Malta said that rare diseases are even rarer on island states such as Malta so it is imperative that the voice of these people is heard and even more important that these people do not feel isolated but supported in ways that make 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 rare disease Europe and is being supported by the National Alliance for Rare Diseases Support Malta, the Marigold Foundation, University of Malta, RD-Action, E-Rare and the Innovative Medicines Initiative together with the Malta Medicines Authority.

Source: Government of Malta