The Voice of Rare Disease
Patients in Europe
Making universal health coverage a reality for people living with a rare disease
The current pandemic underscores the importance of ensuring universal health coverage (UHC) for everyone, including people affected by rare diseases.
Over 300 million people are living with a rare disease around the world and 30 million in Europe, plus their family members and carers whose lives are also directly affected.
As a result of a rare disease, these people carry a high burden in many aspects of their lives - physically, financially and socially. UHC can help them tackle the daily challenges they face because of a rare disease.
Policy makers and healthcare providers need to plan and build health and care systems to achieve UHC that is inclusive of the needs of people living with a rare disease.
More than ever, we need international action on health and rare diseases.
Initiated by EURORDIS in 2015, Rare Diseases International, the global alliance of people living with a rare disease, has made great progress in advocating for the inclusion of rare diseases in key policies on UHC.
In September 2019, UN Member States adopted the historical Political Declaration on UHC including a commitment to strengthen efforts to address rare diseases, the first time ever rare diseases have been included within a UN declaration adopted by all 193 Member States. This was the result of ambitious advocacy efforts from the rare disease community, EURORDIS, Rare Diseases International and the NGO Committee for Rare Diseases (a substantive committee established under the umbrella of the Conference of NGOs in Consultative Relationship with the United Nations).
Over 300 million people are living with a rare disease around the world and 30 million in Europe, plus their family members and carers whose lives are also directly affected.
As a result of a rare disease, these people carry a high burden in many aspects of their lives - physically, financially and socially. UHC can help them tackle the daily challenges they face because of a rare disease.
Policy makers and healthcare providers need to plan and build health and care systems to achieve UHC that is inclusive of the needs of people living with a rare disease.
More than ever, we need international action on health and rare diseases.
Initiated by EURORDIS in 2015, Rare Diseases International, the global alliance of people living with a rare disease, has made great progress in advocating for the inclusion of rare diseases in key policies on UHC.
In September 2019, UN Member States adopted the historical Political Declaration on UHC including a commitment to strengthen efforts to address rare diseases, the first time ever rare diseases have been included within a UN declaration adopted by all 193 Member States. This was the result of ambitious advocacy efforts from the rare disease community, EURORDIS, Rare Diseases International and the NGO Committee for Rare Diseases (a substantive committee established under the umbrella of the Conference of NGOs in Consultative Relationship with the United Nations).
Making UHC a reality for people living with a rare disease
Now that UN Member States have committed to UHC that is inclusive of rare diseases, steps need to be taken to make this a reality.
At the end of 2019, Rare Diseases International signed a memorandum of understanding (MoU) with the World Health Organization (WHO). The MoU aims to address public health needs and issues related to rare diseases and ensure the achievement of UHC that is inclusive of rare diseases, specifically supporting "healthcare systems strengthening through global networking of specialised services”.
The MoU proposes the establishment of a WHO Collaborative Global Network for Rare Diseases (WHO CGN4RD), using a structured approach to group rare diseases by therapeutic areas that encompasses all rare diseases and leaves no one behind. The WHO CGN4RD will connect major academic healthcare organisations (hubs) with multi-disciplinary rare disease specialist services at regional and global levels.
Operational steps to initiate this Global Network have already been taken in 2020 including the preparation of a needs assessment study which will support the development of a conceptual and methodological framework in 2021. This framework will promote the identification, assessment and support of centres of expertise that will be connected internationally through the CGN4RD. RDI is also undertaking a comprehensive consultative process with patient advocates in each of the six WHO regions as part of this work.
The COVID-19 pandemic has shocked healthcare systems to their core and brought to the forefront the need to urgently address those pre-existing health, social and economic inequalities that the rare disease community has been tackling for a long time.
In order to ‘build back better’, it is essential to remind Member States of their UHC commitments, which go beyond COVID-19 itself and include specific efforts to address rare diseases. In a recent statement, drafted with input from national and regional rare disease alliances as well as international federations, RDI issued a message to protect people living with a rare disease from being discriminated against and becoming even more vulnerable in COVID-19 response and recovery strategies, as well as in long-term health system restructuring plans.
At the end of 2019, Rare Diseases International signed a memorandum of understanding (MoU) with the World Health Organization (WHO). The MoU aims to address public health needs and issues related to rare diseases and ensure the achievement of UHC that is inclusive of rare diseases, specifically supporting "healthcare systems strengthening through global networking of specialised services”.
The MoU proposes the establishment of a WHO Collaborative Global Network for Rare Diseases (WHO CGN4RD), using a structured approach to group rare diseases by therapeutic areas that encompasses all rare diseases and leaves no one behind. The WHO CGN4RD will connect major academic healthcare organisations (hubs) with multi-disciplinary rare disease specialist services at regional and global levels.
Operational steps to initiate this Global Network have already been taken in 2020 including the preparation of a needs assessment study which will support the development of a conceptual and methodological framework in 2021. This framework will promote the identification, assessment and support of centres of expertise that will be connected internationally through the CGN4RD. RDI is also undertaking a comprehensive consultative process with patient advocates in each of the six WHO regions as part of this work.
The COVID-19 pandemic has shocked healthcare systems to their core and brought to the forefront the need to urgently address those pre-existing health, social and economic inequalities that the rare disease community has been tackling for a long time.
In order to ‘build back better’, it is essential to remind Member States of their UHC commitments, which go beyond COVID-19 itself and include specific efforts to address rare diseases. In a recent statement, drafted with input from national and regional rare disease alliances as well as international federations, RDI issued a message to protect people living with a rare disease from being discriminated against and becoming even more vulnerable in COVID-19 response and recovery strategies, as well as in long-term health system restructuring plans.
Play your part in advocating for UHC for all
From September 2020, and in the lead up to UHC Day on 12 December, RDI and EURORDIS will also launch a new campaign and set of advocacy tools to encourage their member patient organisations to advocate at a national level for the implementation of UHC that is inclusive of rare diseases.
If you would like to be involved in this campaign please contact Clara Hervas, Public Affairs Manager, EURORDIS/ Rare Diseases International: clara.hervas@eurordis.org.
If you would like to be involved in this campaign please contact Clara Hervas, Public Affairs Manager, EURORDIS/ Rare Diseases International: clara.hervas@eurordis.org.
Eva Bearryman, Senior Communications Manager, EURORDIS
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