| Announcements

Every year, 100 million people are driven into poverty because medical care costs much more than they could afford. Millions of people, even today, continue to not have access to primary health services, and even more are forced to choose between their health or food, clothing or shelter.The United Nations, recognizing the problem, in its “Agenda 2030 for Sustainable Development“, set the goal of achieving Universal Health Coverage (UHC) by 2030, so that all people, wherever they live, have access to quality Health services whenever they need them without incurring financial difficulties due to their cost, while in 2019, at a High Level Meeting of the United Nations General Assembly on the Staff Regulations, all 193 Member States signed a relevant political declaration, which makes special reference to Rare Diseases.Taking into consideration of this ambitious and historically significant declaration and as a Society shows its true face by how the health of the most vulnerable is treated, the World Organization for Rare Diseases- Rare Diseases International (RDI) and the European Organization for Rare Diseases (EURORDIS) have worked together to develop of a new Campaign, entitled # UHC4RareDiseases (“Universal Health Coverage for Patients with Rare Diseases”), so that Patient Organizations around the world and citizens can demand from states the design and implementation of policies and programs UHC that will include Rare Diseases.In particular, Global Rare Diseases community, through this new action, comes to ask policy makers to ensure full coverage of Rare Patients, taking action that will address the following three dimensions of UHC: Population, Services and Direct Expenses.



Cover people living with a Rare Disease 

In most countries, a significant number of marginalized populations, such as those with Rare Diseases, are not fully covered by health care. Rehabilitation will begin with collection of data, in order to understand the situation, but also obstacles that affect the equal coverage of the needs of these patients.


Therefore, we ask policy makers to:

• Inform, Sensitize, but also make Rare Diseases visible in all areas, including Health, Social Welfare, Work, Education and Research.

• Support the Identification of Rare Diseases, as well as their better Classification and Coding.

• Improve access to accurate and timely Diagnosis of Rare Diseases.



Include other Services, but also, the existing ones should adapt to the needs of people with Rare Diseases

People living with a Rare Disease have complex needs, and some of the services they need may be different from those needed by the general population. The National Authorities must pay special attention to this when developing the package of primary health services, in order to include the services that are necessary for this vulnerable population. 

Therefore, we ask policy makers to:

• Facilitate Access to high quality healthcare and treatments for Rare Diseases.

• Develop policies for Identification, Accreditation and Support of Experts and Centers of Expertise for Rare Diseases, as well as their national and international Networks.

• Recognize and develop Rare Diseases Social Services and bridge the gap between Health and Social Services.

• Promote Rare Disease Research to increase availability of services and treatments for this population.



Protect people with Rare Diseases from further financial difficulties 

People living with a Rare Disease often face severe financial difficulties because they are obligated to pay for their own care or treatment. They also have additional financial burden related to their complex needs, including transportation, rehabilitation, and costs associated with the loss of income from caregivers. This even greater financial burden leads to the impoverishment of patients with Rare Diseases.

Therefore, we ask policy makers to:

• Guarantee Access to Affordable Therapies: Orphan Drugs, New Drugs and Health Technologies for Rare Diseases.

• Ensure that people living with a Rare Disease and Disability receive the support they need.

• Ensure a satisfactory balance between personal and professional life, but also protection from loss of income for family members who are Carers.

MDA Hellas, Muscular Dystrophy Association in Greece, in collaboration with other Rare Patients Associations, aiming to contribute to the treatment of effects of Rare Diseases on the lives of Patients and their Families, participates in this Campaign, taking action to improve access to Orphan Medicines and Health Technologies, as well as the socio-economic living conditions of Patients. That is why MDA invites its members, other Patients’ Associations, as well as everyone who is an ally in this effort to also take part, promoting relevant information material in its language, in order, all together, to Inform, Awareness, Claim, and finally Achieve Universal Health Coverage of Patients with Rare Diseases, thus fulfilling the commitment of states for Health for All.

Campaign #UHC4RareDiseases is held on the occasion of World Day of Universal Health Coverage, on December 12, 2020, and in view of World Day of Rare Diseases, on February 28, 2021, which claims the smoothing of inequalities and equal access to health for patients with Rare Diseases.

For further information on the # UHC4RareDiseases Campaign click


Comments are closed.