Učešće Srbije na najvećoj svetskoj PHA Konferenciji u Orlandu 2018. godine

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I ove godine imali smo priliku da prisustvujemo navećoj i najznačajnijoj svetskoj PH konferenciji održanoj u Orlandu. Pred više od 40 udruženja i lidera sa 5 kontinenata, imali smo tu privilegiju i čast da održimo predavanje na temu „PH centres in Serbia and the role of associations in their formation”
Oranizator nam je za ovu značajnu temu odrediop 30 minuta, koje smo maksimalno iskoristili i pre svega napomenuli značaj i uticaj PH Evrope u svim aspektima našeg delovanja, koji su doveli do velikih uspeha. Prikazali smo i film koji smo napravili “ Živeti sa PAH bez terapije” . Gromoglasni spontani aplauzi tokom predavanja ali i na samom kraju su dokaz da smo se na pravi način predstavili kao i diskusija koja se razvila u koju se ulključio veliki broj ljudi. Svi u Sali su bili saglasni da je prezentacija bila izuzetna.
Takodje, veliko zadovoljstvo je bilo i slušati predstavnike PHA Evrope, Gn. Gerry Fichera i Hall Skaara, koji su u izuzetno nadahnutom i savršenom predavanju govorili na temu “ The white spot program – PHA EUROPE”.

Glavni utisci nakon prvog dana konferencije koji je bio posvećen Internacionalnim liderima je, da je sve prošlo savršeno i da smo imali prilike da čujemo i da se upoznamo sa trenutnom situacijom sa PH u celom svetu.
Tokom konferencije imali smo i grupni sastanak, zajednički ručak sa predstavnicima ARENA pharmaceuticals, koji su pokazali veliko interesovanje za saradnju sa udruženjima. Tokom konferencije održali smo još nekoliko izuzetnih sastanaka sa predstavnicima industrije.
Raduje nas i veliki broj ljudi koji su poreklom sa teritorije Balkana i koji su došli da saslušaju naše predavanje ali i da se sa nama upoznaju.
Sve u svemu, konferencija sa preko 2.000 učesnika, više od 80 zemalja sveta, sa preko 50 sesija, posvećenih, kako samom pacijetu, tako i njihovim porodicama, njihovim negovateljima, sa sajajnim idejama i predlozima, punim razumevanja, ali i sjajnim predavanjima vrhunskih stručnjaka u vezi sa terapijama, pravcem u kom nauka ide, ali isto tako i predavanja na temu osnaživanja samih udruženja i praktičnim predelozima i savetima kako da udruženja postanu još jača, vidljivija i kako da se finansijski osnaže.
Imali smo priliku da u okviru Sajma farmaceutske industrije, razgovaramo sa stručnjacima koji su nas još bolje upoznali sa terapijskim opcijama, ali i sa ishranom, aktivnostima i svemu onome što može da doprinese boljem i kvalitetnijem životu pacijenata.
PHA Evropu su pored prestavnika Srbije, predstavljali: Austrija, Norveška, Ukrajina, Irska, Španija i Izrael.
Moj lični utisak je da je konferenciji prisustvovalo jako malo zemalja iz Evrope s obzirom na važnonst i obilnost samog događaja, kao i na broj udruženja koji se nalazi u Evropi i u okviru PHA Evrope i koja čine više od polovine ukupnog broja udruženja u celom svetu.

Sjajno iskustvo, mesto na kojem smo mnogo toga naučili i koje nam je dalo nadu i snagu da idemo još snažnije i upornije u potrazi za našim pravima.

Again this year we had an opportunity to attend one of the biggest and most significant World PH Conference held in Orlando. In front of more than 40 associations and leaders from five continents, we had a privilege and a great honor to deliver a lecture on the following subject -„PH centres in Serbia and the role of associations in their formation”
Organizer has given us 30 minutes for this important subject, which we managed to use fully. First and foremost we have mentioned the importance and influence of PH Europe on all aspect of our engagements and activities which led to great successes. We then decided to show a movie under the title “Life with PAH without therapy” that we have made. Thunderous and spontaneous applauses during lecture but also at the very end were a good proof that we have showed ourselves in a good light, together with discussion that our presentation provoked in which vast majority of attendants eagerly got involved. Everyone in the hall agreed that our presentation was exceptional.
It was a great pleasure to listen to representatives of PH Europe Mr. Gerry Fisher and Mr. Hall Skar who talked about “The white spot programme – PHA Europe” during a very enthusiastic and meticulously prepared lecture.
Major impressions after the first day of the conference were dedicated to international leaders. Everything went perfectly and we had a chance to listen and learn everything about current situation regarding PH around the whole world.
During the conference we had a group meeting, and we went to lunch with the representatives of ARENA, who demonstrated great interest and desire for cooperation with associations. As the conference progressed we also attended several other meetings with key people and representatives of industries and pharma’s.
We were also very happy because great number of people originally from Balkans came to listen our lecture and to meet with us.
All in all, this was a conference with more than 2.000 participants, with more than 50 sessions dedicated to the patients but also to their families, caregivers and to brilliant ideas and suggestions all given with full understanding and compassion to the afflicted. This was also a conference during which leading experts presented us with exceptional lectures about therapies and the course of scientific research. Many lectures also focused on associations and how we can empower them more. It was all presented with practical and concrete suggestions and advices on how we can make our association stronger, more prominent and more financial stable.
We had a chance to speak with pharmaceutical expects on the Exhibition of Pharmaceutical Industries, who very thoroughly informed us about therapeutically options, but also about proper diets, activities and about everything that can contribute to better quality of patient’s life.
PHA Europe beside its Serbian representative also had representatives from Austria, Norway, Ukraine, Ireland, Spain and Israel.
My personal impression is that the number of representative was not adequate considering the importance of this conference, and especially if we take into account number of associations in Europe and within PHA Europe, which together make more than half of total number of associations in the whole world.
This was a tremendous experience, and a place where we could learn a lot, here we received a great deal of hope and courage to continue stronger and more persistent in an attempt to find and get our rights.