Social policy & integrated care

  1. Integrating rare diseases into the EU social agenda
  2. Integrated care for rare diseases
  3. Specialised social services
  4. RareResourceNet, the European Network of Resource Centres for Rare Diseases

The role of EURORDIS 

EURORDIS promotes the engagement of patients in social care and advocates on behalf of the patient community to promote both the integration of rare diseases into social services and policies, as well as integrated health and social care for people living with a rare disease and their carers.

 

Rare diseases seriously impact everyday life and employment

In 2017, over 3,000 people living with a rare disease and carers responded to the first Europe-wide survey on the impact of rare diseases on everyday life.

survey ‘Juggling care and daily life: The balancing act of the rare disease community

The results from the survey ‘Juggling care and daily life: The balancing act of the rare disease community’ show that rare diseases have a severe impact on everyday life, including that:

  • The time and care burden is substantial for a majority of patients and carers;
  • Rare diseases have a strong impact on work-life balance, leading to absence from work, hampered professional activity, and economic burden;
  • Patients and carers are faced with complex and hard to manage care pathways, which include for example the need to visit different services in a short space of time and lack of communication between service providers;
  • Patients and carers feel badly informed about their rights and feel that social services are badly prepared to support them; and
  • Rare diseases have a significant impact on the mental health of patients and carers.

 

 

The survey was conducted via Rare Barometer Voices, the EURORDIS survey initiative, in 23 languages across 42 countries and was carried out in the scope of the EU co-funded project INNOVCare.

 

EURORDIS activities in social policy & integrated care

1. Integrating rare diseases into the EU social agenda

EURORDIS calls for EU social policies to respond to the needs of people living with a rare disease.

The European Pillar of Social Rights sets out 20 key principles aiming at delivering new and more effective rights for citizens. It comprises three main categories: equal opportunities and access to the labour market; fair working conditions; and social protection and inclusion.

EURORDIS, with the support of its Social Policy Advisory Group, submitted a contribution to the European Commission consultation on the Pillar of Social Rights. In line with the Commission Expert Group Recommendations to Support the Incorporation of Rare Diseases into Social Services and Policies, EURORDIS called for, among other things:

  • Adapted, flexible and non-discriminatory employment twinned with adequate social services;
  • Adapted, non-discriminatory schooling for children with a rare disease;
  • Adaptation of Member States’ functioning and disability assessment systems to integrate rare disease specificities;
  • Convergence of health and social systems across the EU to support the development of holistic and integrated care pathways;
  • Involvement of people living with a rare disease in the design of social policies and services;
  • Policies that address specific needs of carers; and
  • Policies that consider the full life cycle, from childcare to adulthood, to ageing.

The results of the first Europe-wide survey on the social impact of rare diseases confirms the serious social impact of rare diseases and reinforce the need for the European Pillar of Social Rights to promote the measures called for by EURORDIS.

2. Integrated care for rare diseases

EURORDIS contributes to advance integrated care for people living with a rare disease within its capacity as partner of the EU-funded project INNOVCare, via the development of good practices, and by collaborating closely with health, social and integrated care stakeholders.

INNOVCare (Innovative Patient-Centred Approach for Social Care Provision to Complex Conditions) addresses the social challenges faced by rare disease patients and the gaps in the coordination between medical, social and support services in European Union Member States.

This EU-funded project gives voice to the social needs of people living with a rare disease. It supports the EU and Member States in implementing necessary structural reforms in social care systems by developing and testing a holistic, personalised care pathway.

 

3. Specialised social services

Specialised social services are instrumental to the empowerment of people living with rare diseases and are essential to the improvement of their well-being and health.

Therapeutic RecreationTherapeutic Recreation     Respite Care Services Respite Care Services     Respite Care ServicesAdapted Housing     Respite CareResource Centres

4. RareResourceNet, the European Network of Resource Centres for Rare Diseases

RareResourceNet, the European Network of Resource Centres for Rare Diseases, aims to accelerate the development and the implementation of holistic high-quality care pathways for people living with a rare disease across Europe, to contribute to improved standards of care and support.

Resource centres for rare diseases are a one-stop shop service, complementary to health and social care services, specifically designed for people living with a rare disease and their carers. Resource centres provide holistic services and support, while also creating a bridge between patients and families and various stakeholders, services and professionals providing health care, social care, and social support – including rehabilitation, education and employment.

RareResourceNet is being established in the scope of the EU-funded INNOVCare project, with the support of EURORDIS.

Contact

Raquel CastroFor more information about EURORDIS’ work on social policy please contact:

Raquel Castro
Social Policy Senior Manager
raquel.castro@eurordis.org

 

 

Page created: 28/02/2018
Page last updated: 06/03/2018
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases