Issued by The National Alliance for Rare Diseases Support – Malta (RDM)

WE DID IT! FIRST EVER U.N. RESOLUTION TO INCREASE THE VISIBILITY OF RARE DISEASE PATIENTS

The National Alliance for Rare Diseases Support – Malta(RDM) is pleased to announce the formal adoption of the Resolution by the United Nations recognising the over 300 million persons living with a Rare Disease (PLWRD) worldwide and their families.

As member of the NGO Committee for Rare Diseases at the United Nations, together with Rare Diseases International and with EURORDIS ,  RDM is delighted that the hard work carried out in the last years  have finally bore fruit with the United Nations General Assembly adopting formally the resolution and in doing so recognising this often marginalised part of our society.

The Resolution focuses on the importance of non-discrimination and advances key pillars of the UN Sustainable Development Goals (SDGs), including access to education and decent work, reducing poverty, tackling gender inequality, and supporting participation in society.

Founder and President of the National Alliance for Rare Diseases Support – Malta, Michelle Muscat said that RDM is pleased to have been part of this process since the very beginning and happy to see that this cause has now reached international acceptance. RDM will continue to strive for equal rights of rare diseases patients and of undiagnosed patients and their families in Malta and will continue to advocate for a National Action Plan for Rare Disease Patients.

The Resolution, proposed by Spain, Brazil, and Qatar and co-sponsored by 54 countries, including Malta, was adopted by consensus with the support from all 193 UN Member States of the General Assembly. This follows the UN Third Committee’s adoption of a ground-breaking text as part of its agenda on Social Development and is a significant turning point that places the rare disease community firmly on the agenda of the UN.

Addressing the specific challenges faced by Persons Living with a Rare Disease is a necessary step toward making this vulnerable population visible and contributing to the UN Agenda 2030 SDGs.

If you live with a rare disease or condition, or if your disease has not yet been diagnosed, do reach out to the National Alliance for Rare Diseases Support – Malta.

The Alliance gives support to patients, their families and carers and acts as their voice.

Contact details: email

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