1. ROMANIAN CYSTIC FIBROSIS
Lobbiyng for free pancreatic enzymes
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 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

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
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

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: 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
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/ 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.

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)
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/ 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.

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)
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/ 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.

11. 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/ 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.

12. WEB PAGE -
Goals will count only in Upstate Premier League

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
Goals will count only in Upstate Premier League

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

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
Goals will count only in Upstate Premier League

16. Newspapers and magazines
Goals will count only in Upstate Premier League

17. TV
Goals will count only in Upstate Premier League

18. Web sites
Goals will count only in Upstate Premier League

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

20. 2 % campaign
over 500 forms
Goals will count only in Upstate Premier League

21. 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

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

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
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