Pokrenuta je platforma za registar retkih bolesti u Evropi

(European Platform for Rare Diseases Registries), više informacija naći ćete na www.epirare.eu

U toku je potpisivanje peticije za finansiranje ovih registara.

Ne prekidajte istraživanja retkih bolesti!

Istraživanja retkih bolesti i zdravstvena zaštita osoba koje od njih boluju imaju posebne potrebe. Zbog toga što su ove bolesti retke, i informacije o svakoj od njih oskudne, saradnja i maksimalno korišćenje ograničenih izvora podataka o njima  izuzetno su potrebni. Za većinu ovih retkih obolenja ne postoji posebna ustanova, a u mnogo slučajeva ne postoji ni država koja ima dovoljan broj pacijenata ove vrste da bi mogla razviti potrebno znanje o nekoj od ovih bolesti i kako ih lečiti.

Preporuka Saveta EU o retkim bolestima i Direktiva Evropskog Parlamenta i Saveta EU o  Zdravstvenoj Zaštiti bez Graničnih Barijera, svedoče o potrebi i hitnosti za saradnju zemalja pri prikupljanju i razmeni podataka s ciljem da se pomognu istraživanja retkih bolesti i zdravstvena zaštita pacijenata koji od njih boluju. Iako su ove bolesti još uveliko nepoznate, veliku nadu pružaju povremeni ohrabrujući uspesi do kojih se došlo zahvaljujući novim metodama primenjenim u biomedicinskim i genetičkim istraživanjima poslednjih godina.

Ove nade su sada ugrožene parlamentarnom raspravom o Pravilima opšte zaštite podataka, predlogom Jana Philippa Albrehta izvestioca odbora LIBE (Nemačka), koji smatra da: ”Obrada osetljivih podataka u istorijske, statističke i naučno istraživačke svrhe nije tako hitna ni značajna kao što je javno zdravlje ili socijalna zaštita. Zbog toga nema potrebe za uvođenjem izuzetka koje bi ih izjednačio sa drugim navedenim svrhama.” (Obrazloženje Izmene i dopune br.27).

Propuštanjem prilike za korišćenje i razmenu tog malog broja prikupljenih podataka dramatično će se odgoditi poboljšanje zaštite zdravlja pacijenata obolelih od retkih bolesti. Ustvari, to bi dovelo do njihove diskriminacije u pogledu prava na kvalitetnu zdravstvenu zaštitu i stvorilo bi ozbiljan etički problem za Evropsku Uniju i nacionalne ustanove.

Zbog toga, pozivam čitavu Zajednicu zainteresovanu za unapređenje zdravstvenih istraživanja, posebno u oblasti retkih bolesti, da potpišu ovu peticiju i razglase potrebu da se to učini što je pre moguće. Aktivnosti Evropskog parlamena koje se odnose na ovu Uredbu su već u toku, a zaključenje  rasprave je predviđeno za Juni 2013.

Molimo Vas pridružite nam se. Link za peticiju je na stranici:

http://www.change.org/en-GB/petitions/don-t-stop-research-on-rare-diseases-2

Luciano Vittozzi, MSc, rukovodilac projekta EPIRARE

(Fotografija ”Čekanje” izabrana je među radovima koji konkurišu na 5. umetničkom konkursu ”Pegazov let” (2013.) sa ciljem da promoviše društvene uključenosti obolelih od retkih bolesti. Fotografija predstavla život jedinog deteta u Evropi i jednog od devetoro dece u svetu za koje se zna da boluju od X-vezanog pigmenta retikularnog poremećaja)

Molimo Vas, svojim potpisom podržite ovu platformu. Pošaljite je prijateljima.

Hvala za razumevanje i podršku.

U ime Udruženja pacijenata sa retkim tumorima UPRT

Gorjana Ajzinberg

673 Comments

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