Integrated care

Integrated care is essential for people living with rare diseases to attain the highest standard of health and wellbeing, and to achieve equal opportunities, rights and full participation in society.

However, integrated care is not yet a reality for most people living with rare diseases and their family members, who experience significant care coordination gaps:

65% have to visit different health, social and local services in a short period of time

67% find that these services communicate badly with each other

7 in 10 find that organising care is time-consuming

6 in 10 find care hard to manage

Why integrated care matters for people living with rare diseases

Living with a rare disease has an impact on all aspects of life. The majority of people with rare diseases live with a serious, chronic and highly complex health condition, as well as with disabilities.

As such, they need care and support from different healthcare professionals, as well as from a range of social and community services.

As they grow, people living with rare diseases also need a coordinated approach to their transitions from childhood to adulthood, and to ageing.

Integrated care, both within the health system and between health, social, and community services, is essential for enabling people living with rare diseases to achieve optimal health and enjoy their full human rights on an equal basis with others. Without it, the coordination of care tasks falls mostly on the person and the family, negatively impacting their health and wellbeing, as well as their social participation, living standards, and financial independence.

“I need care and support that takes into account the full me. It needs to address how my various health issues interconnect, and to consider where and how me and my family live, and the many barriers around us. The care professionals do not coordinate with each other, so me and my family are my case managers. It’s an endless odyssey to access our health and social rights – trying to manage the multiple appointments, explaining my health condition and my disabilities, sorting all sorts of paperwork. It’s physically and mentally exhausting, and it takes so much time that we are forced to be absent from work and many social activities”

Adéla Odrihocká, rare disease advocate, Czech Republic

Where we are today

There is lack of coordination between care providers within and between health, social and community services. As a consequence, care pathways are complex, fragmented and difficult to navigate. In addition, there is often a disease-centred approach, which misses to consider the person as a whole.

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Where we want to get to

People living with rare diseases and their families should be provided with timely, high-quality, life-long and holistic care according to their needs. For that to be happen, integrated care, in coordination within and between care providers must become a reality.

EURORDIS objectives in the area of integrated, holistic life-long care

Advocate for integrated care, provided with a person-centred, holistic and life-long approach.

Contribute to the design, implementation, and promotion of integrated care reforms and good practices.

Empower the rare disease community and facilitate their engagement in integrated care reforms.

EURORDIS initiatives, projects and networks

EURORDIS works to advance integrated care for people living with rare diseases through a range of initiatives, projects, and collaborations at European and International levels.

EURORDIS initiatives
European and international projects
Networks

Social Policy Action Group (SPAG): A group of volunteer advocates who support EURORDIS in shaping policies and practices that improve the access of people living with rare diseases and their families to holistic care, social and human rights.
Rare Barometer programme: A survey-based initiative that collects data from people living with rare diseases and their families to better understand the barriers they face. In 2017, EURORDIS published the Rare Barometer Survey Juggling Care and Daily Life, which brought to light the gaps in care coordination and their impact on daily life.

INNOVCare: A EU-funded multistakeholder project which aimed to bridge the gaps in care coordination for people with rare diseases and their families. Its actions included the implementation and evaluation of a pilot of case management, the creation of a European network of resource centres, and the elaboration of policy recommendations.
EU Joint-Action to support European Reference Networks’ integration to national healthcare systems (JARDIN): Its activities include the elaboration of multidisciplinary care pathways and of case management guidelines for people with rare diseases.
European Joint-Actions on Rare Diseases : EU-funded initiatives, implemented in collaboration with the former Commission Expert Group on Rare Diseases. Its policy recommendations and good practices covered integrated care aspects.
Rare 2030: A two-year Foresight Study, supported by EU bodies, that guided a multi-stakeholder reflection on rare disease policy in Europe through the next ten years and beyond.

International Foundation for Integrated Care (IFIC): A multistakeholder network, with whom EURORDIS collaborates. IFIC focuses facilitating the adoption of integrated care in policy and practice around the world.
European Reference Networks (ERNs): Virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on rare diseases that require highly specialised and multidisciplinary care, as well as concentrated knowledge.
RareResourceNet: A European Network of Resource Centres for Rare Diseases, of which EURORDIS is a Board member. Its mission is to advance holistic high-quality care for people living with rare diseases.

Through these initiatives and projects, EURORDIS and other stakeholders are making significant strides in improving integrated care for people living with rare diseases. However, there is still much work to be done, and EURORDIS remains committed to working with partners from across the rare disease community to improve the lives of people living with rare diseases.

“We need individual care plans based on our specific needs and environment, which are implemented in a multidisciplinary and coordinated way. We need our healthcare providers to talk to each other. We need healthcare providers, social welfare providers and community services to coordinate our care, and we can participate by sharing our needs and experience during specific trainings. And we need case managers who support us and all the care providers to deliver our individual care and support plan. ”

Dorica Dan, Chair of the Romanian Prader Willi Association

Call to Action and Policy Recommendations

To ensure that integrated care is effectively and timely delivered to people living with rare diseases and their families, we call on all stakeholders to take action to ensure that:

Specific mechanisms for integrated care provision are implemented, including individual care plans, multidisciplinary care pathways and case management services.

Care providers across sectors are equipped with knowledge, good practice and care coordination strategies allowing them to adequately support people living with rare diseases.

People living with rare diseases are empowered and meaningfully engaged in the design, implementation and monitoring of care policies and services.

To shape integrated care solutions, EURORDIS and its members, through discussions with all stakeholders, have developed several other policy recommendations.

The recommendations are:

Implementing integrated care mechanisms

All people living with rare diseases must be entitled to an individual, person-centred care plan, to be delivered within a person-centred, holistic and lifelong approach, in coordination between all care providers.

National care pathways descriptions’ for rare diseases and for undiagnosed conditions should be developed, indicating the process and care steps to follow, the existing coordinating mechanisms and care providers’ responsibilities.

Case management must be implemented to support integrated care delivery to people living with rare diseases and their families.
Creating a supportive political environment at a national level

All National Plans and Strategies for rare diseases must include provisions to enable people living with rare diseases and their family to access timely and adequate integrated health and social care.

Countries must implement specific mechanisms to guarantee coordination between national policy sectors, such as inter-ministerial working groups and shared budgets between ministries.
Gathering and disseminating knowledge and good practices

Training for health and social professionals must be developed and delivered, to increase workforce capacity and knowledge on rare diseases, good care practices, available resources, and the rights of the person and their family.

The European Union and European countries must continue to support pilot projects, as generators of good practice and innovative services.
Using European instruments and networks to implement integrated care

Available EU mechanisms and funding instruments should be used for initiatives that support Member States to co-create and transfer good practices and innovative care models. These include innovative EU-projects and EU-wide networks, such as the European Reference Networks (ERNs), the European Network of Resource Centres for Rare Diseases, and Orphanet.

European Reference Networks and the European Network of Resource Centres for Rare Diseases must continue to function as platforms to collect and disseminate good practices, in cooperation with organisations representing people with rare diseases.

A cross-ERN working group on integrated care should be established, by 2025, in partnership with European Resource Centres for Rare Diseases.
Empowering and meaningfully engaging people with rare diseases

The engagement of people living with rare diseases, and their civil society organisations, must be a requisite for the design, implementation and delivery of all services and policies that concern them.

Information, training and peer-to-peer support must be available for people with rare diseases and their families. Toolkits to navigate health and welfare systems should also be developed at a national level.

EURORDIS carries out its advocacy efforts to achieve integrated care for people living with rare diseases by engaging with EU institutions and national and European parliamentarians, and by empowering advocates to bring about change at European and national levels, e.g. through Brussels Rare Disease Week and the EURORDIS Open Academy.

How can you and your organisation make a difference in improving integrated care?

As representatives of people living with rare diseases, you and your organisation can advocate for integrated care at the national or European level. For this, you can use our full recommendations for holistic care and the evidence from our Rare Barometer survey on Juggling care and daily life.

You can also raise awareness of the importance of integrated care, and of case management services, using the results of the INNOVCare project. Or, you can advocate for the continuity of essential European platforms, including the European Reference Networks and the European Network of Resource Centres for Rare Diseases.

If you would like to support EURORDIS’ work on integrated care topics, contact us to know about opportunities to join our Social Policy Action Group.

Podcast episodes

Breaking down barriers: Living with a rare disease and disability

Julien Poulain, Communications Manager at EURORDIS, explores some of the barriers faced by people with a visible or invisible disability, and particularly focuses on those barriers relating to accessible workplaces and the moving across borders to visit, or live in, a different European country.

Listen to the episode

Young advocate Jane Velkovski on accessibility and making a difference through football

In this episode of Rare on Air, host Julien Poulain speaks with Jane Velkovski, a passionate young advocate for people with spinal muscular atrophy (SMA) and other disabilities.

Listen to the episode