ROMANIAN CYSTIC FIBROSIS Lobbiyng for free pancreatic enzymes 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 National Programme for children with CF: not enough funds for the complete treatment of ALL patients National Registry: on line registration of new patients

CF IN ROMANIA diagnosed patients (400 children, 90 adults) late diagnosis / under diagnosis National Programme for children with CF 7 centers in most cases, 1 center=1-2 pediatricians (no physiotherapist, no nutritionist, no psychologist) not enough funds for the complete treatment of ALL patients

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 Has been recognized by Forbes and Smart Money Forbes “a charity that won’t waste your money” When the Foundation was formed most people did not live past 5, now the avg lifespan is 36.8

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

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

ACTIVITIES

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 Since 2008, we established contacts with similar national and international organizations. We offered support groups for the families of childrens and for adults with CF. Since August 2008, we are lobbying the authorities for the basic treatment for CF (for example, for pancreatic enzymes). RCFA raised money through personal mail/e-mail solicitations, unsolicited donations and special fundraising events and find sponsors for different needs of the patients (for example, Kreon donation). We created the web page of RCFA () in order to keep the patients informed and to communicate better with them.

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) Since 2008, we established contacts with similar national and international organizations. We offered support groups for the families of childrens and for adults with CF. Since August 2008, we are lobbying the authorities for the basic treatment for CF (for example, for pancreatic enzymes). RCFA raised money through personal mail/e-mail solicitations, unsolicited donations and special fundraising events and find sponsors for different needs of the patients (for example, Kreon donation). We created the web page of RCFA () in order to keep the patients informed and to communicate better with them.

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) Since 2008, we established contacts with similar national and international organizations. We offered support groups for the families of childrens and for adults with CF. Since August 2008, we are lobbying the authorities for the basic treatment for CF (for example, for pancreatic enzymes). RCFA raised money through personal mail/e-mail solicitations, unsolicited donations and special fundraising events and find sponsors for different needs of the patients (for example, Kreon donation). We created the web page of RCFA () in order to keep the patients informed and to communicate better with them.

Educational conferences Annualy since 2008 In 2015: SE European Cystic Fibrosis Conference in colaboration with CF Europe Since 2008, we established contacts with similar national and international organizations. We offered support groups for the families of childrens and for adults with CF. Since August 2008, we are lobbying the authorities for the basic treatment for CF (for example, for pancreatic enzymes). RCFA raised money through personal mail/e-mail solicitations, unsolicited donations and special fundraising events and find sponsors for different needs of the patients (for example, Kreon donation). We created the web page of RCFA () in order to keep the patients informed and to communicate better with them.

WEB PAGE - WWW.AFCR.RO Goals will count only in Upstate Premier League

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 Goals will count only in Upstate Premier League

LOBBY - FREE PANCREATIC ENZYMES CENTERS FOR ADULT PATIENTS BENEFITS FOR PEOPLE WITH DISABILITEIS MORE REIMBURSED DRUGS AND DEVICES Letters to

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 Goals will count only in Upstate Premier League

Newspapers and magazines Goals will count only in Upstate Premier League

TV Goals will count only in Upstate Premier League

Web sites Goals will count only in Upstate Premier League

FUNDRAISING Objectives: Find the financial support for activities of the association (conferences, support groups, donations etc). Goals will count only in Upstate Premier League

2 % campaign over 500 forms Goals will count only in Upstate Premier League

1st June Market Children from a school in Bucharest sold self-made objects to the visitors Money were donated to RCFA Goals will count only in Upstate Premier League

Donations from different companies Goals will count only in Upstate Premier League

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 We intend to organize support groups in different regions of the country and educational conferences for both, parents and doctors. We are hoping to attract parents to become more active in our association and to have volunteers to help us in our activit