2017 főbb eseményei

2017. 01.02. – Ismét az EPF Kapacitásépítő tréning folytatása volt az első esemény -iroda
2017. 01. 9. – Az NBF tagszervezeteivel megbeszélés –iroda
2017. 01.11. – Ritkanap előkészítő tárgyalás - iroda
2017. 01.17. - Civil Support megbeszélés náluk – a Kalandorok program szervezéséről (István, Eszter, András)
2017. 01.23. - EPF kommunikációs stratégiakészítő programzáró konferenciája: 01.26-27
2017. 02.01. – Ritkanap megbeszélés, - 02. 06. Új adománygyűjtő honlap megbeszélés
2017. 02.14. – BEMOSZ közgyűlés - iroda
2017. 02.15. – OGYÉI-ben előadást tartottunk a betegbiztonságról a BETA keretein belül
2017. 02.16. – RBV helyszíni szemle, Debrecen
2017. 02.22-23. – Részvétel a 2. Multi-Stakeholder Szimpóziumon a Ritka Betegségek Terápiáinak Elérhetősége
tárgyában, Brüsszel
2017. 02.25. – Ritka Betegségek Világnapjának megrendezése a Debreceni Egyetemmel, a tagszervezetekkel,
együttműködésben - Debrecen
2017. 02.27. – Előadás az első hazai dedikált ritka betegségek kutatói programjának (RitBetKut) indító
konferenciáján - Szeged
2017. 02.28. – Ritka Szépségek Kiállítás, Budai Fonó
2017. 03.07. – Elnökségi megbeszélés a SE Ritka Betegségek Hálózatának vezetésével
2017. 04.14. – Az Eurordis-al közösen rendezendő Európai Ritka Betegségek három napos konferenciájának
előkészítése
2017. 03.20-22. – Részvétel az Európai Együttműködés Erősítése a Farmakovigilancia Terén Konferencián
(SCOPE) – London
2017.03. 22. – Súlyos és Halmozottan Fogyatékosok konferencia (ÉTA) - Budapest
2017. 03.24. – Rirosz vezetőségi értekezlet
2017. 03.30. – A RIROSZ bemutatása a MAGYOTT Farmakovigilancia Munkacsoport Szakmai Délutánján,
mely a várandóság alatti gyógyszeralkalmazás biztonságosságával foglalkozott (Richter Rt.) és részvétel a MOTESZ az „Európai Uniós-fejlesztések- egészségnyereség” kerekasztalon - Medicina konferencia, MTA
2017. 04.08. - RIROSZ közgyűlés
2017.04.25. – Képviselet a Magnet bank Civil Szalonján.
2017. 04.26. – Részvétel a BETA-n „Gyakorlati tudnivalók - forrásteremtés, jogi környezet, aktualitások”
témakörben
2017. 05.03. – Részvétel az „European Pillar of Social Rights & Rare Diseases” webináriumon.
2017. 05.04. – Részvétel az Urológia kerekasztalon
2017. 05. 06. – Előadás a Bechterew Világnapon a betegbiztonságról és egészségértésről Kőbányán, majd
beszámoló rendezvény a Kalandorok kampányról a Magnet bankban
2017. 05.12. – Részvétel a „Céges Társadalmi Felelősségvállalás kultúrája Európában és Magyarországon” című
konferencián - Budapesti Európai Ifjúsági Központ.
2017. 05. 15. - Megbeszélés az országos tisztifőorvosi feladatokért felelős helyettes államtitkárral a ritka
betegségek ügyéről.
2017. 05. 17. – Részvétel a Microsoft Kapcsolati Napon.
2017. 05. 18-20. – Az Európai Ritka Betegségek Konferencia megszervezése a 20 éves EURORDIS-al közösen.
EMM, CNA, e-PAG ülések - Budapest, Hotel Helia
2017. 05.23. – Részvétel a Preimplantációs (azaz beültetés előtti) Genetikai Diagnosztikát bemutató
sajtótájékoztatón (Istenhegyi Géndiagnosztikai Centrum)
2017. 05.24. - Részvétel a BETA-n „Gyakorlati tudnivalók - hálózatépítés, együttműködés, kommunikáció”
témakörben
2017. 06.01-02. – Részvétel az INNOVCARE Workshop-on: a ritka betegségek holisztikus és innovatív ellátása
témájában - Kolozsvár
2017. 06.07. – Jótékonysági ruhavásár szervezése az irodában
2017. 06.12-13. – Részvétel az EU H2020 SMART-map projektje keretében a Szintetikus Biológiával foglalkozó
2. Ipari Dialógusban - CEU
2017. 06. 16-17. – Előadás tartása az EUPATI hazai platform konferencián (OGYÉI)
2017.06.19. – Részvétel a Magnetbank Rapid Randin.
2017. 06.25. – Részvétel az EPF „on line média” képzésén (Civil Support)
2017. 06.28. – Részvétel az AIPM Health Literacy Munkacsoport ülésén
2017. 06.29. – Kerekasztal részvétel az OGYÉI Innovációs Irodájának bemutató rendezvényén.
2017.08.21. – Köszöntő a SE Ritka Betegségek Intézete Fekvőbeteg Osztályának megnyitó ünnepségén
2017. 08.24. - Évtervező megbeszélés (iroda)
2017. 08.30. – EPF Civil Support megbeszélés
2017. 09.08. – BETA coaching
2017. 09.08-09. – Előadás tartása a Magyar Személyre Szabott Medicina Társaság VIII. kongresszusán - Galyatető
2017. 09.11. – Megbeszélés, tervezés, év, EUROTEV, Ritkanap
2017. 09.15. – Részvétel a „Konferencia a civilekért” programon - ÉTA
2017. 09.18. – Megbeszélés az országos tisztifőorvosi feladatokért felelős helyettes államtitkárral a Ritka
Betegségek Szakértői Bizottságról. + A RIROSZ bemutatása a Bárczi Gusztáv GY.K-n
2017. 09.25. – Részvétel az Európai Unió Interreg Europe Programja keretében megvalósuló „HELIUM” című
projekt ülésén - AEEK
2017. 09.26. – CIC megbeszélés a GUDI-ról: a vállalatok ügyhöz kapcsolt értékesítési támogatási rendszeréről
2017. 09.27. - BETA coaching,
2017. 10.04. – Egyeztetés Szekeres Pállal, a fogyatékos emberek társadalmi integrációjáért felelős miniszteri
biztossal - SzGyF.
2017. 10.06. – Részvétel az első magyar Betegszervezeti Tudásbörzén – Lurdi Ház
2017. 10.07. – EPF Kapacitásépítő tréning záró konferencia - Hotel Mercure Buda
2017. 10.13. – Ritka Betegségek Szakértői Bizottsági Ülés
2017. 10.17. – Részvétel az European Patient Innovation Summit (EPIS) 2017 munkaértekezleten
2017. 10.18. – e-PAG telekonferencia
2017. 10.20. – Az V. EUROPLAN konferencia megrendezése - CSBO.
2017. 10.24-27. – Részvétel az EURORDIS CNA, CEF Konferenciákon - Párizs
2017. 11.07. – Szülői értekezlet a Ritka betegségekről a SE-n
2017. 11.13. – Részvétel a „HELIUM” című projekt ülésén - AEEK
2017. 11.20. – Részvétel a Gyermekek jövője Konferencián
2017. 11.24. – Részvétel a Medicina konferencián és Egészségügyi Miniszteri - Államtitkári Csúcstalálkozón
2017. 11.28. – Részvétel a Fogyatékosság Tudományi Konferencián - BGGYK
2017. 11.29. – Részvétel az FSZK TÁRS projekt érdekvédelmi Fórumán
2017.12.01. – Nyertesként részvétel az AIPM „Nekem Szól! Egészségértés Díj 2017” díjátadó ünnepségén
2017. 12.05. – Részvétel a Kitárt Ajtók Ünnepén, BGGYK
2017. 12.14. – Részvétel az AIPM Health Literacy / Communication munkacsoport ülésén

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