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 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 having been further exacerbated by the COVID-19 pandemic.
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 upon 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;
- A striking number of 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
- 37% reporting feeling often (19%) or very often (18%) unhappy and depressed, compared to 11% of the general population
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 disease 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.
Thank you also for drafting so nice the idea of holistic care. I would change very little: “My daughter’s rare disease affects the various aspects of her life and of our life. From getting a diagnosis, to accessing care, education, 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 so that we can face the challenges living with a rare disease brings to her and to our family.”
Dorica Dan, mother of a daughter with Prader Willi syndrome, member of the EURORDIS Social Policy Advisory Group
About 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 work places, psychological support and social prescribing.
The ambition of EURORDIS is holistic care to be available and
accessible to the 30 million people living with a rare disease in Europe, and their families, by 2030.
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 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; and
- Enabling them to fully enjoy their fundamental human rights, on equal footing with other citizens.
- Objective one: To promote access to quality and adequate social services and policies.
- Objective two: To advocate for integrated care, bridging health and social care.
- Objective three: To advocate for equity of rights and opportunities, including disability and employment rights.
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.
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 co-ordination 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 thousand 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 to 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.
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 session 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.