Conference 5 - “Patient’s Experience in the Development and Implementation of NATIONAL PLANS”


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EURORDIS Membership Meeting 2011
Paula Brito e Costa
Amsterdam, 13th May2011

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Conference 5 - “Patient’s Experience in the Development and Implementation of NATIONAL PLANS”

  1. 1. “Patient’s Experience in the Development andImplementation of NATIONAL PLANS” EURORDIS Membership Meeting 2011 Paula Brito e Costa Amsterdam, 13th May 2011
  2. 2. RaríssimasMission and Objectives Mission Raríssimas was founded in 2002 with the goal of helping patients, families, friends and all the ones closely affected by Rare Diseases or interested in this subject. Strategic Objectives Spreading information about rare diseases; Promoting the integrated management/follow up of the patients with rare diseases; Contributing to a positive differentiation concerning diagnosis, information about medical services/specialties, treatment and therapeutics; Raising awareness about the importance of gaining competences concerning rare diseases subject.
  3. 3. RaríssimasOperational Goals • Creating a Help Line – LINHA RARA to provide information and support to families, health professionals, etc. • Developing a New Website with updated and quality information on Rare Diseases, from A to Z ”; • Opening two Multi-disciplinary Centers for treatment of Rare Diseases – Centro RarÍSSIMO - Lisboa and Porto; • Implementing investigation projects, locally, nationally and internationally; • Building Casa dos Marcos (respite centre for Rare Disease patients). 3
  4. 4. RaríssimasA model based on innovation… • In the way we present ourselves; • In the way we lobby (at the ground base, at middle levels, • In the way we communicate; high levels and community levels; • In the way the Association is managed; • In the way we define political strategies and implement them; • In the way we interact with our partners/stakeholders; • In the way we build Casa dos Marcos. • In the way we advocate for the patient;
  5. 5. Raríssimas“Because no one does anything alone” Maria Cavaco Silva – Portuguese First Lady • Unite efforts = Unite people • Define short-medium term strategies; • Present defined strategies publically; • Discuss and share strategies with political forces; • Support implementation of strategies ASAP; • Persistency
  6. 6. RaríssimasBut much more is needed… Consulting at the highest level: • Juridical • Financial • Communication • Education • Image • Strategy • Lobbying
  7. 7. RaríssimasCurrent Strengthening Scientific Council - President - António Vaz Carneiro Consultive Council for Strategic Reflection - Statuary Organ - President - Maria Leonor Beleza General Assembly - President - Francisco Sá Carneiro Fiscal Council - President - António Trindade Nunes
  8. 8. RaríssimasConsultive Council for Strategic Reflection 8
  9. 9. RaríssimasConsultive Council for Strategic Reflection 9
  10. 10. RaríssimasAnd the National Plan for DR is born! • Because rare diseases gather innumerous unfavorable factors; • Because Portugal has a National Health System; • Because there was already some work done in specific areas ( National Plan for Hemoglobinopathies – 1987) • Existence of National Early Diagnosis Program - 1979
  11. 11. RaríssimasThe need to re-think intervention on Rare Diseases • On an integrated level • Building partnerships • Assigning responsibilities to ALL social actors • Creating a new vision of the Portuguese State
  12. 12. RaríssimasNational Plan for RD – Uniting Efforts Patient Associations Ministry of Health • Strong pressure over public • Created by the Directorate - institutions General of Health • Effective desire to achieve • Signed by the Minister of elaboration, discussion and Health in November 2008 concretization of the • Intention to include the NPRD measures proposed in the National Health Plan • Strong communication (written but not yet accomplished) component in order to • Health Minister signed the achieve goals proposed in agreement for the the National Plan implementation of reference • Active partners centers for RD in January 2011
  13. 13. Raríssimas“United We Are Stronger”, but… • Portugal faces economical recession; • Portugal has the means to • On the International day for RD, the accomplish the implementation of National RD Federation (FEDRA) the NPRD, but the Government is publically denounces inequalities cautious; concerning patients’ access to Orphan Drugs; • The Government provides replies to • There is a massive response all over the issues of inequalities on a daily basis; country; • With a “management Government”, • FEDRA sees its representativeness the Directorate-General of Health growing; and FEDRA are rushing processes to • FEDRA reinforces its strategy and social create the 1s reference centers; partners intervene to provide support; • Government falls creating a window of • FEDRA reinforces appeals to the opportunity for Rare Diseases; Health Minister in order to see the • For the 1st time, FEDRA participates in NPRD included in the National the Parliamentary Commission for Health Plan – no response from the Health Health Minister!
  14. 14. RaríssimasRare Diseases from A to Z - Presentation
  15. 15. RaríssimasUn unconditional support 15
  16. 16. RaríssimasUn unconditional support
  17. 17. RaríssimasScientific Council
  18. 18. RaríssimasBesides fighting… we create solutions Building Casa dos Marcos (respite Center for RD Patients)
  19. 19. RaríssimasBesides fighting… we create solutions
  20. 20. Casa dos MarcosAssistential Model • 1 residential unit - 24 patients • 1 autonomous residential unit – 5 patients • 1 unite of Occupational Activities Center – 30 patients • 1 rehabilitation unit (open to the community) • 1 clinical unit (open to the community) • 1 unit of continuous medical care – 30 patients, connected to the national network of medical care facilities • 1 private unit of medical care – 9 patients 20
  21. 21. RaríssimasBesides fighting… we create Website about solutions Rare Diseases from A to Z
  22. 22. RaríssimasThis is how we make history… With love and because of love
  23. 23. Thank you!