Holistic care

Holistic care is care that encompasses the 360° spectrum of the health, social and everyday needs of people living with a rare disease and their families.

People living with a rare disease need follow-up care and support from different health professionals, often from several different medical specialists, as well as from social workers and other social and local service providers. These may also include rehabilitation, day-care, home care, personal assistants, respite services, adapted schools and workplaces, psychological support and social prescribing.

“My daughter’s rare disease affects the various aspects of her life and of our life. From getting a diagnosis to accessing care, education, and employment, and to living the most independent and fulfilling life that we can. We need to be part of a holistic structure of care and support that integrates all aspects of our life.“

Dorica Dan, mother of a daughter with Prader Willi syndrome and EURORDIS Board Member

Why is holistic care a priority for people living with a rare disease?

Today, the 30 million Europeans living with a rare disease and their family members remain a marginalised and largely invisible population, with little information about their diseases and their rights, few treatments, and a high level of psychological, social and economic vulnerability.

Most people living with a rare disease are living with a disability and have no dedicated therapy of any kind, thus making the integration of paramedical and social disciplines a priority, alongside the classical medical approach to disease treatment and management.

While care pathways remain very complex and fragmented across European countries, the consequences of living with a rare disease reach far beyond health issues, affecting the well-being, socio-economic, family, education, employment and other social inclusion spheres. All of these challenges have been further exacerbated by the COVID-19 pandemic.

EURORDIS objectives in the area of holistic care

To promote access to quality and adequate social services and policies

To advocate for integrated care, bridging health and social care

To advocate for equity of rights and opportunities, including disability and employment rights

EURORDIS’ ambition is to see people living with a rare disease and their families integrated in a society that provides holistic care, by:

Advocating on their behalf, partnering with them to make a change and empowering them to access the support they need

Being aware of their needs and effectively providing timely, high-quality care according to these needs

Breaking down barriers in access to care, treatment, well-being, education, employment, independent living, leisure, psychological support and all aspects of social inclusion

Enabling them to fully enjoy their fundamental human rights, on equal footing with other citizens

It is urgent to address the serious unmet needs of people living with a rare disease and their families to reduce their psychological, social and economic vulnerability. To do so begins with accurately assessing the impact of rare diseases on the individual, health care system and society followed by a holistic, and multi-sector approach from research, to diagnosis, access to treatment, health care and social care, at both national and European levels.

Results from the first European survey on the everyday impact of rare diseases (carried out through the EURORDIS Rare Barometer Programme) demonstrate the serious impact of living with a rare disease:

85%

of the survey respondents declaring that the rare disease impacts several aspects of their health and everyday life

65%

have to visit different health, social and local services in a short period of time and 67% find that these services communicate badly with each other

7 in 10

find that organising care is time-consuming and 6 in 10 find it hard to manage

7 in 10

people living with a rare disease and family carers have to reduce or stop their professional activity and 69% face income decrease

54%

declaring that their rare disease caused or amplified isolation from friends
and family

37%

reporting feeling often (19%) or very often (18%) unhappy and depressed, compared to 11% of the general population

A smiling boy in a wheelchair on a wooden ramp with metal barriers and trees in the background. — Freedom, Dystrophic Epidermolysis bullosa (France)

A mother and her child laugh while lying on their backs, surrounded by autumn leaves and dressed in clothes that match the yellow and brown colours of the scene. — Sweet November – Myself and my son, Daniel. He has a genetic disorder: Williams syndrome. Russia, November 2016

A man dressed in cycling gear, cycling up hill on a three-wheeled bike. — What I do best – Andrew is competing in the Road Race at the Australian National Paracycling Championships. Disease represented: Three Rare Brain malformations, Periventricular Nodular Heterotopia with overlying Polymicrogyria (posterior subtype) and Cerebellar Hypoplasia. (Australia 2023)

Advocate
Partner
Empower

Advocate

EURORDIS and its members have called upon the EU, all European countries and all stakeholders within the health and social sector to ensure that people living with a rare disease and their families are not left behind.

With its advocacy work on holistic care, EURORDIS intends to support European countries in implementing the national plans for rare diseases, the European Pillar of Social Rights, the United Nations Convention on the Rights of Persons with Disabilities and the Sustainable Development Goals set by the United Nations.

Only together will we ensure that no one of the 30 million Europeans living with a rare disease is left behind.

Partner

EURORDIS represents people living with a rare disease in EU-funded projects and co-creates solutions to advance holistic and integrated care for rare diseases with other stakeholders.

Starting as a partner within the INNOVCare project (Innovative Patient-Centred Approach for Social Care Provision to Complex Conditions) EURORDIS supported the bridging of the gaps in the coordination between medical, social and support services.

The project developed and evaluated a holistic, person-centred care pathway, using case managers. The people living with a rare disease and the family members who received the case management increased their level of information about their disease and rights, their knowledge of available services and their capacity to self-manage.

Having partnered with more than 200 experts and thousands of patients in the Rare 2030 Foresight Study, EURORDIS recommended the implementation of EU-wide and national actions by all stakeholders to guarantee the integration of people living with a rare disease and their families in societies and economies and enabling them to live their life to their full potential, alongside 7 other recommendations at the European and national levels.

EURORDIS also engages patient representatives in social services, social policies and integrated care reforms through the Social Policy Action Group, a group of volunteer patient advocates who represent the voice of people living with a rare disease and advocate for their holistic care.

As a member of the Board of RareResourceNet, the European Network of Resource Centres for Rare Diseases, EURORDIS also ensures the engagement of patients in these social and holistic care services.

Empower

With the Rare Barometer European survey on the everyday impact of rare diseases – ‘Juggling care and daily life: The balancing act of the rare disease community’’, EURORDIS gathered and shared evidence to support its members and the rare disease community at large in voicing the unmet everyday needs of people living with a rare disease and their family members.

Via capacity-building sessions and the annual EURORDIS Membership Meeting and its meetings of the Council of National Alliances and Council of European Federations, EURORDIS further empowers its members to advocate for holistic care for rare diseases.

Podcast episodes

Breaking down barriers: Living with a rare disease and disability

The majority of people living with a rare disease in Europe also live with a disability, and have to deal with unfair daily barriers to living freely and reaching their full potential.

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