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HDC udruga

HDC Association

HRVATSKO DRUŠTVO ZA CELIJAKIJU
Croatian Society for Coeliac Disease

OIB 81120960029 - MB: 3779840 - Račun: 2360000-1101309220
01 2916 281 - 098 738 576
Adresa: Celiko centar, Tomašićeva 10, 10000 Zagreb, Hrvatska
www.celijakija.hr - e-mail: celijakija@celijakija.hr


Hrvatsko društvo za celijakiju (u daljem tekstu HDC) nacionalna je civilna organizacija oboljelih od celijakije ili glutenske enteropatije (CD). Kontinuirano djeluje iz Zagreba od 1991. do 2008. pri Klinici za dječje bolesti Zagreb, a od tada u Celiko centru, Tomašićeva 10.

Misija HDC: djelovati na podizanju svijesti o celijakiji samih oboljelih i šire zajednice, te na poboljšanju kvalitete življenja oboljelih, štititi interese celijakičara, obavještavati o pravilnom izboru namirnica u prehrani oboljelih, širiti znanje o posljedicama zanemarivanja stroge bezglutenske dijete oboljelih, djelovati na principu opće korisnosti.

Vizija je educirano, svjesno društvo i oboljeli, rano otkrivanje i dijagnosticiranje celijakije te dostupna i sigurna hrana za oboljele.

Cilj - prevencija posljedica kronične bolesti celijakije, unaprjeđenje tretmana bolesti, održanje i zaštita zdravlja oboljelih. Organizirano djelovanje na razvijanju programa i projekata terapije bolesti i potpore osobama s celijakijom i njihovim obiteljima. Podizanje svjesnosti o prisutnosti celijakije, lobiranja u svojstvu grupe.

HDC okuplja osobe svih dobnih i spolnih skupina kojima je dijagnosticirana CD ili druga bolest ili stanje organizma koje zahtijeva bezglutensku prehranu te stručnjake, organizacije i institucije kao svoje suradnike ili članove koji organizirani od ove civilne organizacije postaju aktivni sudionici u stvaranju boljeg i kvalitetnijeg života. Ima podružnice diljem Hrvatske. Zastupa oboljele radi ostvarenja njihovih prava i interesa.

Osnovna djelatnost Udruge zbrinjavanje je oboljelih u terapiji CD i djelovanje na podizanju svjesnosti o celijakiji kod oboljelih i šire zajednice. Poboljšavanje kvalitete življenja kronično oboljelih osoba s celijakijom, zaštita njihovih interesa. Educiranje, širenje znanja o bolesti i prehrani bez glutena. Stvaranje alata, oruđa za održavanje zdravlja. Stvaranje temelja za održanje zdravlja i uvijeta za što sigurniju bezglutensku prehranu.

Činom uspostave dijagnoze CD od strane liječnika za osobu s CD i njenu obitelj započinju problemi. Provođenje zdravstvene striktne eliminacijske dijete koja je jedina terapija ove bolesti stvara mnoge probleme oboljelom, njegovoj obitelji i šire. Zdravstvenu bezglutensku dijetoterapiju nikako je nije lako provoditi jer njene specifičnosti u mnogome kompliciraju život i održanje zdravlja. Stoga po dijagnosticiranju CD oboljeli se upućuju na HDC. Glutena „otrova“ za oboljele ima svugdje i tamo gdje se ne očekuje. I najmanje količine stvaraju trajne posljedice. Terapija zahtjeva uvećana znanja, sveobuhvatne alate za povrat i održavanje zdravlja, za provođenje terapije (smjernice, podatke o dijetoterapiji i hrani bez glutena, laboratorijske analize hrane na gluten, popise ne štetne hrane…), striktnu pažnju i potporu okoline. Kako je celijakija doživotna bolest, tako i članstvo treba kontinuirano biti uz HDC da bi sustavno biti zbrinuto novim znanjima i moglo pratiti stalne promjene u terapiji.

Član nacionalnog društva za celijakiju može biti pojedinac iz svih dijelova Hrvatske (i šire), pravna i fizička osoba. Dovoljno je ispuniti pristupnicu i platiti godišnju članarinu. Oboljeli članovi dobiju opširnija i neophodno potrebna znanja kroz sveobuhvatnu HDC Mapu materijala.

HDC poštom članstvu diljem Hrvatske šalje Mapu i potom njene izmjene i dopune kao i pozive, obavijesti o događanjima, radionicama i predavanjima koja će pomoći u životu s celijakijom. Svjesni da je informiranje ključ za razumijevanje celijakije i pravilni tretman bolesti, slanjem tiskanih materijala na adresu kontinuirano obavještavamo članstvo o svim izmjenama i dopunama u dijetoterapiji, o promjenama i naputcima u izboru namirnica, analiziranju proizvoda na gluten, o pravima oboljelih i dr.

Programi i projekti HDC na nacionalnoj razini:

„Terapija celijakije i zbrinjavanje kroz Celiko centar“ - pruža kompletnu podršku oboljelima od celijakije za područje Hrvatske; „Tjedan svjesnosti o celijakiji u Hrvatskoj“ - sedmodnevni informativni program provodi se kontinuirano od 1999.; „Popis dozvoljenih proizvoda za bezglutensku prehranu“, „Analiziranje proizvoda prema sastojku glutena“, „Specijalni bezglutenski proizvodi u Hrvatskoj“ - uređivanje primjene znaka prekriženog klasa u Hrvatskoj, „Deklaracije i gluten na domaćim prehrambenim proizvodima“; „Program informatizacije udruge“, „Kako i tko može priređivati bezglutenski obrok za druge osobe“; „Celijakija, tiha opasna bolest - djelovanje na svijest ljudi“. Organiziranje informativno-edukativnih programa (predavanja, radionice, savjetovanja, druženja). „Čekić vod“ - oporavak i rehabilitacija oboljelih od celijakije; „Opstanak udruge za zdravlje celijakičara“; „Socijalno-humanitarna podrška oboljelima od celijakije“; medijsko-promidžbeni program „Tiha celijakija, neprepoznati problem“, „Celijakija -bolest brojnih lica“; „Informativno edukativan program Celiko centra“ savjetovanja i predavanja za javnost i oboljele od CD. Program tiskanja edukativnih materijala: Mape Celiko, Podataka o održavanju zdravlja, Redovne pošte članstvu, Godišnjeg glasila „Gluc“, Plakata, Letaka, Info materijala…

Program Udruge

- zalažemo se za prava oboljelih osoba s celijakijom (pravo na održanje zdravlja kronično oboljelih osoba s potrebom posebne bezglutenske prehrane, socijalna prava, ....izmjene štetnih zakona, obilježavanje hrane obzirom na gluten…)

- organiziramo za oboljele i njihove obitelji edukacije oko provođenja održavanja zdravlja osoba s bolešću koja zahtjeva bezglutensku prehranu,... redovne sastanke članstva,…

- organiziramo savjetovališta, stručno edukativna predavanja, radionice, okrugle stolove i tribine.

- organiziramo manifestaciju «Tjedan svjesnosti o celijakiji», okrugle stolove, doedukacije stručnog kadra. Unutar Udruge je organizirana stručna pomoć liječnika, pravnika, psihologa, nutricionista, .…

- organiziramo rekreativna druženja, ljetovanja, zimovanja, izlete.…

- humanitarno pomažemo članstvu.

- informiramo i izrađujemo tiskane materijale za izbor hrane i distribuiramo edukativno -informativne materijale te knjige, letke, plakate vezano uz bolest….

- zastupamo članstvo prema instituciji kao posrednik.

Udruga pomaže u prvom redu kroz savjetodavno - edukativno djelovanje. Širi znanja o celijakiji kako samih oboljelih tako i stručnjaka raznih struka. Savjetuje o prehrani i održavanju zdravlja, o izboru namirnica za posebnu prehranu i o pripremi obroka. Prikuplja i objavljuju podatke i popise industrijski složenih proizvoda prema sadržaju glutena. Inicira i preko institucija provodi analize proizvoda prikladne za svakodnevnu prehrambenu upotrebu. Omogućuje da oboljeli ima izbor ne štetne hrane. Oboljelima daje osnovni alat koji će pomoći u odabiru proizvoda i omogućiti zdravlje.

CROATIAN SOCIETY FOR CELIAC DISEASE
Hrvatsko društvo za celijakiju

OIB 81120960029 - MB: 3779840 - Account: 2360000-1101309220
01 2916 281 - 098 738 576
Address: Celiko centar, Tomašićeva 10, 10000 Zagreb, Croatia
www.celijakija.hr - e-mail: celijakija@celijakija.hr


The Croatian Society for Celiac Disease (hereinafter HDC) is a national civil organization of people suffering from celiac disease or gluten enteropathy (CD). It has been operating continuously from Zagreb from 1991 to 2008 at the Zagreb Children's Hospital, and since then at the Celiko Center, Tomašićeva 10.

HDC's mission: to act on raising awareness of celiac disease among the patients themselves and the wider community, and on to improve the quality of life of patients, to protect the interests of celiac patients, to inform about the proper the choice of foods in the diet of patients, to spread knowledge about the consequences of neglecting strict gluten-free diet of patients, act on the principle of general utility.

The vision is an educated, aware society and sufferers, early detection and diagnosis of celiac disease and available and safe food for the sick.

Goal - prevention of the consequences of chronic celiac disease, improvement of treatment of the disease, maintenance and protection of the health of the sick. Organized action on the development of therapy programs and projects disease and support for people with celiac disease and their families. Raising awareness of presence celiac disease, lobbying as a group.

HDC gathers people of all age and gender groups who have been diagnosed with CD or another disease or organism condition that requires a gluten-free diet, as well as experts, organizations and institutions as its collaborators or members who, organized by this civil organization, become active participants in creating a better and better quality of life. It has branches all over Croatia. Represents patients in order to realize their rights and interests.

The main activity of the Association is the care of patients in CD therapy and work to raise awareness of celiac disease among patients and the wider community. Improving the quality of life of chronically ill people with celiac disease, protecting their interests. Educating, spreading knowledge about the disease and gluten-free diet. Creation of tools, tools for maintaining health. Creating the foundation for maintaining health and conditions for the safest possible gluten-free diet.

With the act of establishing a CD diagnosis by a doctor, problems begin for a person with CD and their family. The implementation of a health strict elimination diet, which is the only therapy for this disease, creates many problems for the patient, his family and beyond. Healthy gluten-free diet therapy is by no means easy to implement, because its specificities complicate life and maintaining health in many ways. Therefore, upon diagnosis of CD, patients are referred to HDC. Gluten "poison" for sufferers is everywhere and where you don't expect it. Even the smallest amounts create lasting effects. Therapy requires increased knowledge, comprehensive tools for restoring and maintaining health, for carrying out therapy (guidelines, information on diet therapy and gluten-free food, laboratory analyzes of food for gluten, lists of non-harmful foods...), strict attention and support from the environment. As celiac disease is a lifelong disease, membership should continue to be with HDC in order to be systematically provided with new knowledge and to be able to follow constant changes in therapy.

A member of the national society for celiac disease can be an individual from all parts of Croatia (and beyond), a legal entity or a natural person. It is enough to fill out the application form and pay the annual membership fee. Affected members get more extensive and necessary knowledge through the comprehensive HDC Material Map.

HDC mails the Map and then its amendments to membership throughout Croatia, as well as invitations, notifications about events, workshops and lectures that will help in living with celiac disease. Aware that information is the key to understanding celiac disease and proper treatment of the disease, by sending printed materials to the address, we continuously inform the membership about all changes and supplements in diet therapy, about changes and instructions in the choice of foods, analyzing products for gluten, about the rights of patients, etc.

HDC programs and projects at the national level:

"Celiac disease therapy and care through the Celiko Center" - provides complete support for celiac disease patients in Croatia; "Celiac Disease Awareness Week in Croatia" - a seven-day informative program has been carried out continuously since 1999; "List of permitted products for a gluten-free diet", "Analyzing products according to gluten content", "Special gluten-free products in Croatia" - editing the application of the cross-class mark in Croatia, "Declarations and gluten on domestic food products"; "Computerization program of the association", "How and who can prepare a gluten-free meal for other people"; "Celiac disease, a silent dangerous disease - impact on people's consciousness". Organization of informative and educational programs (lectures, workshops, counseling, socializing). "Čekić vod" - recovery and rehabilitation of patients with celiac disease; "Survival of the Celiac Health Association"; "Social and humanitarian support for patients with celiac disease"; media and publicity program "Silent celiac disease, an unrecognized problem", "Celiac disease - a disease with many faces"; "Informative and educational program of the Celiko Center" counseling and lectures for the public and people with CD. Printing program of educational materials: Celiko Maps, Information on health maintenance, Regular mail to members, Annual newsletter "Gluc", Posters, Flyers, Info materials...

Program of the Association

- we advocate for the rights of people with celiac disease (the right to maintain the health of chronically ill people with the need for a special gluten-free diet, social rights, ...amendments to harmful laws, food labeling with regard to gluten...)

- we organize for patients and their families education about maintaining the health of people with a disease that requires a gluten-free diet,... regular membership meetings,...

- we organize counseling sessions, professional educational lectures, workshops, round tables and forums.

- we organize the event "Celiac Awareness Week", round tables, additional training of professional staff. Professional help from doctors, lawyers, psychologists, nutritionists, etc. is organized within the Association....

- we organize recreational gatherings, summer vacations, winter vacations, trips...

- we provide humanitarian assistance to the membership.

- we provide information and create printed materials for food selection and distribute educational and informative materials as well as books, leaflets, posters related to the disease...

- we represent the membership to the institution as an intermediary.

The association helps primarily through advisory and educational activities. It spreads knowledge about celiac disease both among the sufferers themselves and among experts from various professions. He advises on nutrition and maintaining health, on the selection of foods for special diets and on meal preparation. Collects and publishes data and lists of industrially complex products according to gluten content. Initiates and through institutions conducts analyzes of products suitable for everyday food use. It enables the patient to have a choice of non-harmful food. It gives patients a basic tool that will help them choose products and enable health.