JEDRA UDRUGA ZA POMO OBOLJELIMA OD RAKA I

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“ JEDRA” UDRUGA ZA POMOĆ OBOLJELIMA OD RAKA I DRUGIH BOLESTI PLUĆA

“ JEDRA” UDRUGA ZA POMOĆ OBOLJELIMA OD RAKA I DRUGIH BOLESTI PLUĆA

PATIENT ASSOCIATION “JEDRA” Keywords • Lung cancer -among the leading causes mortality in the

PATIENT ASSOCIATION “JEDRA” Keywords • Lung cancer -among the leading causes mortality in the world • The need for better treatment • insufficient therapy Support • Croatian Respiratory Society • Croatian Oncology Society • Croatian Thoracic Society – Torax

“JEDRA”(SAILS) , ACTIVITIES 10. - 12. 2007. - Coordination of gathering necessary materials for

“JEDRA”(SAILS) , ACTIVITIES 10. - 12. 2007. - Coordination of gathering necessary materials for the registration of associations February 2008 - " Jedra " established March 2008 - the first appearance in the media April 2008 - 2 patients on the TV News ( Nova TV ) May 2008 - a leaflet for patients June 2008 - press conference at the Westin Hotel

“JEDRA”(SAILS) , ACTIVITIES • July, 2008 - a petition for better treatment of lung

“JEDRA”(SAILS) , ACTIVITIES • July, 2008 - a petition for better treatment of lung cancer • September, 2008 - in cooperation with the patiens association of 3 350 signed a petition sent to the Ministry of Health and Social Welfare , together with a proposal TOBACCO KUNA 1 Kuna (Croatian money)from each pack of cigarettes sold to be transfer to the Fund for expensive drugs • February 2009 - Marks the world's Cancer Day and announce the project TOGETHER AGAINST CANCER

“TOGETHER AGAINST CANCER” • The Public Health Action entitled “Together Against Cancer” was initiated

“TOGETHER AGAINST CANCER” • The Public Health Action entitled “Together Against Cancer” was initiated by Anti-Cancer Patient Associations: “ Jedra”, “Europa Donna” and “Europacolon” with their partners and under high sponsorship of Croatian Parliament and Ministry of Health and Social Care. • The aforementioned Action was initiated on 4 February 2009, precisely on the WORLD CANCER DAY.

“TOGETHER AGAINST CANCER” • The Action was marked by an unusual, attractive, slightly shocking,

“TOGETHER AGAINST CANCER” • The Action was marked by an unusual, attractive, slightly shocking, still, above all educational 3 D exhibition on the premises of Glyptotheque. Extremely realistic models of all tumour types were exhibited in several chambers equipped with the newest technology. The initial intention was to hold the exhibition area opened for two weeks, but due to the great public and media interest the exhibition was staged in other towns too: Split, Zadar, Rijeka and Osijek.

“TOGETHER AGAINST CANCER” THE AIM OF THE ACTION • • raising common public awareness

“TOGETHER AGAINST CANCER” THE AIM OF THE ACTION • • raising common public awareness of cancer issues importance of setting an early diagnosis availability of the best treatment stimulation of national institutions to bring Resolution on Malignant Tumours - National Programme Against Cancer just as European Parliament and European Commission did it

“JEDRA” 2008 • Total : 36 media appearances ( HTV "Life Live " -

“JEDRA” 2008 • Total : 36 media appearances ( HTV "Life Live " - 13 min & HTV ) • Total Commercial value: 929. 963, 39 kn

MEDIA ANALYSIS Total Commercial value: 1. 692. 468, 90 kn

MEDIA ANALYSIS Total Commercial value: 1. 692. 468, 90 kn

MEDIJSKA ANALIZA Total Commercial value: 1. 692. 468, 90 kn (222 693. 28 EUR)

MEDIJSKA ANALIZA Total Commercial value: 1. 692. 468, 90 kn (222 693. 28 EUR)

RESULTS • Due to the big interest of the public and media the exhibition

RESULTS • Due to the big interest of the public and media the exhibition visited other cities ( Split , Zadar , Rijeka , Osijek ) • Adopted Resolution for combating against cancer and representatives of associations was part of the working group ( 14 th session Croatian Parliament 2. 10. 2009. Unanimously accepted ) • Two new drugs ( Tarceva and Sutent) placed on the list HZZO-a (Croatian Institute for Health Insurance)

GRAND PRIX 2010. • At the 4 th annual award HUOJ-a (Croatian Association for

GRAND PRIX 2010. • At the 4 th annual award HUOJ-a (Croatian Association for Public Relations) in the category of Public Relations in the public sector we have won the first place with the project Together Against Cancer

“JEDRA”(SAILS) , ACTIVITIES • November 2009 - established alliance of oncology association " Together

“JEDRA”(SAILS) , ACTIVITIES • November 2009 - established alliance of oncology association " Together Against Cancer„ (members alliance: Za novi dan, Europa Donna, Europacolon, Sve za nju, Krijesnica, Hrv. udruga leukemija i limfoma, Hrv. udruga prijatelja hospcija, Jedra)

“JEDRA”(SAILS) , ACTIVITIES • December 2009. – The adoption of “Resolution on Malignant Tumours”

“JEDRA”(SAILS) , ACTIVITIES • December 2009. – The adoption of “Resolution on Malignant Tumours” on behalf of Croatian Parliament was perceived as the first significant step in fighting cancer together and solemnly celebrated with a public discussion entitled “TOGETHER AGAINST CANCER- FROM RESOLUTION OF MALIGNANT TUMORS TO NATIONAL ANTI-CANCER PROGRAMME”. This public discussion was held on the premises of Croatian Journalist Association on 26 November 2009

 • The action “Together Against Cancer!- Fashion Designers Against Cancer” was organized by

• The action “Together Against Cancer!- Fashion Designers Against Cancer” was organized by Malignant Disease Patient Association in cooperation with the Faculty of Textile and Technology and Fashion Wardrobe 09. • A humanitarian fashion show was held in Mimara Museum, Besides the professional models, president candidates wore humanitarian fashion show clothes and donated money for the suits they wore. By doing this, they didn’t only donate money, but showed collectiveness and acted as promoters of the common battle against cancer.

“JEDRA”(SAILS) , ACTIVITIES • March 2010 - Frankfurt University of Patients • April 2010

“JEDRA”(SAILS) , ACTIVITIES • March 2010 - Frankfurt University of Patients • April 2010 - Association of „Jedra” brings together people with other lung diseases • November 2010 - Brussels Fighting against tobacco in Western Balkans and Turkey • December 2010 - a humanitarian fashion show MRAK women • May 2011 - Milan visit the Oncology Institute

“JEDRA”(SAILS) , ACTIVITIES • December 2011 - began the project importance of psychological support

“JEDRA”(SAILS) , ACTIVITIES • December 2011 - began the project importance of psychological support in health facilities • The project is implemented in the Clinic for Lung Diseases organized through working groups of patients under the direction of members of the association „Jedra”psychologist and 4 nurses (Wednesdays from 14 -15 h )

“JEDRA”(SAILS) , ACTIVITIES • September 2012 - Psychologist part of the health team in

“JEDRA”(SAILS) , ACTIVITIES • September 2012 - Psychologist part of the health team in the care of patients suffering from pulmonary diseases • November 2012 - started the project in kindergarten „Siget” " I WANT TO BREATHING „ • December 2012 - press conference and presentation of the project ”I WANT TO BREATHING” • March 2013 - February 2015 training 40 teachers of kindergartens Zagreb , Split and Dubrovnik.

“JEDRA”(SAILS) , ACTIVITIES • November 2014: press conference : „We're talking about lung cancer

“JEDRA”(SAILS) , ACTIVITIES • November 2014: press conference : „We're talking about lung cancer : innovations in the approach and method of treatment” • Donations tests to determine the mutation (ALK and EGFR) • December 2014: President of Croatia invites representatives of the Association of „Jedra” and supports the fight against lung cancer

PROBLEMS: • Delayed diagnosis • Unavailability of medicines for ALK -positive patients • EGFR

PROBLEMS: • Delayed diagnosis • Unavailability of medicines for ALK -positive patients • EGFR positive patients targeted therapy can be obtained only in the second line. . .

QUESTIONS ? ? ? • Determine whether the mutation? • ALK -positive patients -

QUESTIONS ? ? ? • Determine whether the mutation? • ALK -positive patients - the availability of treatment?