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ROMANIAN CYSTIC FIBROSIS ASSOCIATION

ROMANIAN CYSTIC FIBROSIS ASSOCIATION. CF IN ROMANIA. 7 CF centers for children : in most cases, 1 center=1-2 pediatricians (no physiotherapist, no nutritionist, no psychologist) NO national program and NO approved CF center for adult patients

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ROMANIAN CYSTIC FIBROSIS ASSOCIATION

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  1. ROMANIAN CYSTIC FIBROSIS ASSOCIATION

  2. CF IN ROMANIA • 7 CF centers for children: in most cases, 1 center=1-2 pediatricians (no physiotherapist, no nutritionist, no psychologist) • NO national program and NO approved CF center for adult patients • National Programme for children with CF: not enough funds for the complete treatment of ALL patients • National Registry: on line registration of new patients

  3. CF IN ROMANIA

  4. PROBLEMS • CF – still an unknown disease in Romania... • Diagnosis - late diagnosis / under diagnosis • Treatment - poor drug reimbursement from Health Ministry and National Health Insurance House (especially for adult patients) • - poor reimbursement for medical deveices (nebuliser-one every five years) • - not all needed drugs are available on Romanian market • Poor access of CF patients to specialized centers (money, distance) • Poor access to information (especially for parents/patients) • Poor hygiene measures in some hospitals • Lung transplantation - not yet possible in Romania

  5. ABOUT RCFA Nonprofit organization Founded in July 2008 in Bucharest by some parents concerned about the situation of CF patients in Romania 43 members (parents, patients, relatives) Budget: 1000 EUR

  6. OBJECTIVES To improve the quality of life of CF patients and their families. To improve the access to care of CF patients To provide informations about the disease and the treatment To promote the highest standards of medical care, based on the European standards

  7. ACTIVITIES

  8. Collaboration with similar organizations National organizations Romanian National CF Association Adult CF Association National Alliance for Rare Diseases Coalition of Organizations of Patients with Chronic Diseases International organizations CF Europe and member countries

  9. Participation on conferences, meetings European Cystic Fibrosis Society Conferences CF Europe annual meetings Course for Organizational Development – organized by National Alliance for Rare Diseases (Zalau, 2009) Balkans Regional Cystic Fibrosis 1st Conference – organized by CFWW (Skopje, 2009) World Hemophilia Day – organized by Romanian Hemophilia Association and National Association of Hemophiliacs in Romania (Bucharest, 2009) European Coordination Action for Research in Cystic Fibrosis EuroCareCF - Consensus workshop SMEs and patient organizations (Bad Nauheim, 2009)

  10. Support groups for families and patients • Annual meetings • Objectives: • - to inform parents/patients about legislative • news with regard to CF • - to facilitate discussions between • parents/patients, to exchange experience • - to mark out future activities of the association • - donations (pancreatic enzymes, Dornase Alfa)

  11. Educational conferences • Annualy since 2008 • In 2015: SE European Cystic Fibrosis Conference in colaboration with CF Europe

  12. WEB PAGE - WWW.AFCR.RO

  13. WEB PAGE - WWW.AFCR.RO Since November 2008 Objectives: To inform parents/patients about our activities, about events, legislative news with regard to CF To improve the communication with parents/patients

  14. LOBBY • - FREE PANCREATIC ENZYMES • CENTERS FOR ADULT PATIENTS • BENEFITS FOR PEOPLE WITH DISABILITEIS • MORE REIMBURSED DRUGS AND DEVICES

  15. MEDIA – AWARENESS CAMPAIGN • Objectives: to build awareness of cystic fibrosis • Activities: information • About the disease • About the problem confronting the families of patients, regarding pancreatic enzymes In newspapers and magazines, TV reportages, radio transmission, web-sites

  16. Newspapers and magazines

  17. TV

  18. Web sites

  19. FUNDRAISING Objectives: Find the financial support for activities of the association (conferences, support groups, donations etc).

  20. 2 % campaign over 500 forms

  21. 1st June Market Children from a school in Bucharest sold self-made objects to the visitors Money were donated to RCFA

  22. Donations from different companies

  23. FUTURE GOALS To organize support groups in different regions of the country To keep on organizing conferences for parents/patients and medical staff To make donations (medicines, physiotherapy devices etc.) To attract parents becoming more active To find volunteers to help us in our activity

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