Workshop 5 - "Presentation of Social Challenges of RD patients in the Joint Action on Rare Diseases"


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Workshop 5 - Brainstorming & Policy Development session: Social Aspects
"Presentation of Social Challenges of RD patients
in the Joint Action on Rare Diseases"
Dorica Dan, Romanian National Alliance

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Workshop 5 - "Presentation of Social Challenges of RD patients in the Joint Action on Rare Diseases"

  1. 1. Amsterdam 13-15 May Provision of specialised social services and integration of RD into social policies and services Eurordis membership meeting Amsterdam, 13-15 May 2011 Dorica Dan – pres e d i nt e RPWA/ RONARDBoD EURORDIS, IPWSO EUCERD member
  2. 2. Topics to be addressed: <ul><li>Future Joint Action on Rare Diseases </li></ul><ul><li>What are the social aspects discussed in the context of National Plans? </li></ul><ul><li>What are the actions planned to address social challenges of rare disease patients? </li></ul><ul><li>What is the added value of a European action? </li></ul>Amsterdam membership meeting, 13- 15 May 2011
  3. 3. F uture JARD and the WP on Specialized Social Services <ul><li>The Joint Action on Rare Diseases (JARD) will integrate through one of the WPs, the specialized social services and rare diseases into existing and future social policies and services at EU level. </li></ul><ul><li>Rationale : </li></ul><ul><li>- needs expressed by patients in different studies;   </li></ul><ul><li>- feedback from the 15 National Conferences on social aspects: </li></ul><ul><li>“ particularly in the field of rare diseases, medical and social aspects are closely linked and the lack of initiatives and health policies specifically targeted at rare diseases conduct to : </li></ul><ul><li>delayed diagnosis and difficult access to treatment and care, </li></ul><ul><li>additional physical, psychological and intellectual impairment, lack of prevention and inadequate social services””… </li></ul>Eurordis membership meeting, 13- 15 May 2011 , Amsterdam
  4. 4. JARD 2012- 2014 <ul><li>The JARD should provide the necessary EU support to the MS in the joint efforts to implement the Council Recommendations on an Action in the field of Rare Diseases . </li></ul><ul><ul><li>for developing and implementing national plans for rare diseases. </li></ul></ul><ul><ul><li>provide the scientific support to the working groups of the EUCERD with the aim of involving all stakeholders. </li></ul></ul><ul><ul><li>to liaise with other EC funded projects to ensure an optimal use of the project’s results (Orphanet, EUnetHTA, CAVOD, EpiRare, TREAT-NMD, e-Rare, Neonatal screening, Burquol, Polka, Pilot European Reference Networks….) </li></ul></ul><ul><li>The tentative contribution of the EC for this Joint Action is 3 million Euros for 3 years. </li></ul><ul><li>Only institutions able to match the funding can be considered as partners (50% contribution). </li></ul><ul><li>EURORDIS – coordinator of the WP on Specialized Social Services. </li></ul>Amsterdam 13-15 May 2011
  5. 5. Specialised social services <ul><li>Specialised social services specific needs of rare disease patients and their families </li></ul><ul><li>instrumental for their well-being and health, and their contribution to the society </li></ul><ul><li>help alleviate the burden of the disease </li></ul><ul><li>provide a solid support to families </li></ul><ul><li>facilitate the social inclusion of patients </li></ul>Amsterdam 13-15 May 2011
  6. 6. Provision of Specialised Social Services and Integration of Rare Diseases into Social Policies and Services <ul><li>Council Recommendations on an Action in the field of Rare Diseases, </li></ul><ul><li>EUROPLAN set of Recommendations for the development of National Plans for Rare Diseases </li></ul><ul><li>EUROPLAN indicators and the synthesis of the EUROPLAN National Conferences </li></ul><ul><li>Medical and social aspects are closely linked </li></ul><ul><li>This link between the health and social dimensions is clearly reflected in the Commission Communication “Solidarity in Health: reducing health inequalities in the EU” </li></ul>Amsterdam 13-15 May 2011
  7. 7. Findings in the EurordisCare studies : <ul><li>Patients regularly express the need to access high quality social services, as shown by the results of the last EurordisCare survey: </li></ul><ul><li>Approx. 60% of families living with rare diseases have a lower income as a result of the disease </li></ul><ul><li>30% of respondents reported that one member in the family had to stop or reduce professional remunerated activities </li></ul><ul><li>16% of respondents had to move house to relocate to one better adapted to their health needs. </li></ul><ul><li>the social and economic burden of rare diseases families is very high </li></ul><ul><li>  </li></ul><ul><li>   </li></ul>Amsterdam 13-15 May 2011
  8. 8. KEY FINDINGS of the 15 EUROPLAN National Conferences <ul><li>The EUROPLAN National Conferences were designed and organi z ed to promote the Commission Communication on Rare Diseases and the Council Recommendation on an Action in the field of Rare Diseases </li></ul><ul><ul><li>They help ed the rare disease community to take the necessary steps towards outlining a high quality National Plan or Strategies on rare diseases (RD) with concrete objectives in each field. </li></ul></ul><ul><li>How to support the harmoni z ation and integration of public health strategies on RD throughout Europe ? </li></ul><ul><li>How to provide support to national authorities to develop and implement National Plans and Strategies for rare diseases </li></ul><ul><ul><li>There is a desired date (2013) for all EU member countries to adopt National Plans or Strategies </li></ul></ul>Amsterdam 13-15 May 2011
  9. 9. EUROPLAN reccomendations <ul><li>Within the EUROPLAN recommendations that M S are invited -by the Council of the European Union- to take note of , recommendations R 6.5 to R6.10 are particularly relevant to the work done within the WP of the JARD: </li></ul><ul><li>R 6.5 - Specialised social services are supported for people living with a chronically debilitating rare disease and their family carers. </li></ul><ul><li>R 6.7 - A directory of centres providing specialised social services, including those offered by patients’ associations, is compiled, kept updated and communicated to national, regional and patients’ websites and included in the EURORDIS/ Rapsody network. </li></ul><ul><li>R 6.8 - Interactive information and support services for patients are promoted (such as help lines, e-tools etc) </li></ul><ul><li>R 6.9 - Information and education material is developed for specific professional groups dealing with rare diseases patients (e.g. teachers, social workers, etc.). </li></ul><ul><li>R 6.10 - The activities aiming at patients’ empowerment carried out by patients’ associations are facilitated. </li></ul><ul><li>  </li></ul>Amsterdam 13-15 May 2011
  10. 10. Focus of the WP <ul><li>2 main areas: </li></ul><ul><ul><li>Specialized Social Services </li></ul></ul><ul><ul><ul><li>Therapeutic Recreational Program </li></ul></ul></ul><ul><ul><ul><li>Respite Care Services </li></ul></ul></ul><ul><ul><ul><li>Adapted housing and relative services </li></ul></ul></ul><ul><ul><li>Introduction of the RD in the Social Policies and Social Services </li></ul></ul><ul><ul><ul><li>training activities for social workers </li></ul></ul></ul><ul><ul><ul><li>sharing of common social guidelines for rare diseases based on experience gained by some countries in this field . </li></ul></ul></ul>
  11. 11. Local, national, international <ul><li>No-one has all the solutions alone and where patients are rare, knowledge is rare and resources are rare we need to work all together to be successful. </li></ul><ul><li>transferring the experience gained in a few countries from national level to EU level: </li></ul><ul><li>mapping specialized social services for rare diseases patients and families in Norway </li></ul><ul><li>identification of existing social guidelines and disseminate methods, tools, and validation processes of good practices </li></ul><ul><li>describing training needs for social services providers and identifying/ sharing existing practices in this field </li></ul><ul><li>training and social guidelines identification and sharing of good practices (workshop) </li></ul><ul><li>collaboration on the development of draft document on guiding principles for social care in RD </li></ul><ul><li>Amsterdam 13-15 May 2011 </li></ul>
  12. 12. Collaborative PartnersȘ <ul><li>Frambu – Norway </li></ul><ul><li>NoRo – Romania </li></ul><ul><li>France </li></ul><ul><li>RD Denmark </li></ul><ul><li>Sweden </li></ul><ul><li>Dutch Steering Committee </li></ul>Cluj-Napoca – 24 June 2007
  13. 13. <ul><li>The role of Specialized Social Services is making people’s lives easier and more secure through simpler and more effective access to services and benefits. </li></ul><ul><li>THANK YOU! </li></ul>Cluj-Napoca – 24 June 2007