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VOLUNTEERS FOR RAREVOLUNTEERS FOR RARE

DISEASESDISEASES -- 33 YEARSYEARS

Iulia JurcaIulia Jurca--SiminaSimina, Florin, Florin JurcaJurca--Simina, Ionela MoacSimina, Ionela Moac, Norbert Pop, Stefan Berci,, Norbert Pop, Stefan Berci,

Iulia Popa, Mihai Gafencu*, Maria Puiu*Iulia Popa, Mihai Gafencu*, Maria Puiu*

Save the ChildrenSave the Children Organization, Organization, TimiTimi OfficeOffice

* UMF* UMF Victor BabeVictor Babe TimiTimioaraoara

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The beginningThe beginning

On 9 August 2007

established the basis for

the Romanian National

Alliance for RareDiseases - ANBRaRo

Main objective:

raising community

awareness for people

affected by rare diseasesinvolving actors in this

area: patients, families,

professionals and policy

makers.

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We, Medical students and Save the ChildrenOrganization, Timi branch, joined ANBRaRos cause

and started projects based on volunteer activity.

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Introduction

In our projects we intend to contribute, both by involving as many

volunteers as possible and by providing information, coming directly into

contact with patients and their families, and change their perception and

even civil society perception towards the rare diseases issue.

Rare diseases

- are a major public health problem

- are a global priority in health strategies

- are little known by the medical corps,

which hampers diagnosis and proper care

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Objective

Improving quality of life for children with disabilities caused

by rare genetic diseases

Improving information quality on identification, prevention

and counseling.

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Rezults

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Informing/ forming the volunteers

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Medical- genetic training

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Psiho- social training

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First European Rare Diseases Day

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Rare Disesess Week

2008- 2010

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Informing Campaings

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Parents training

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Seminar : Together for Rare Diseases

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Visiting

LuisLuis TurcanuTurcanu

Childrens HospitalChildrens Hospital--

TimisoaraTimisoara

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Visiting

DGASPC Timis

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Visiting

Association of ChildrenAssociation of Children

with Autismwith Autism Beyond WordsBeyond Words

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We used different games and

puzzles to interact with children,

materials purchased to overcomefeelings as embarrassment and

disbelief, and which also promoted

interaction of children in order to

create friendship and support,

communication and experience

exchange between them. .

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Christmas at Beyond Words

Association

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Visiting

CristianCristian SerbanSerban

Medical Center,Medical Center, BuziasBuzias

20092009

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CristianCristian SerbanSerbanMedical Center,Medical Center, BuziasBuzias

20102010

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People Informing Campaign

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February 2009- We realized 2 guides:

Rare Diseases Guide for Volunteers

Rare Diseases Useful Advice for Parents

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Special Prize at the National Competition

Carol Davila Bucharest, 26 februarie 2009

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"Interdisciplinary approach in the

management ofPrader-Willi Syndrome"

First East- European Conference

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Rare Diseases Symposium

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Play decide

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Year by year,ourfavourite and

colourfulevent is certainly

SSPPEECCIIAALL NNEEEEDDSS CCHHIILLDDRREENNSS DDAAY Y

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Special Needs Chilldrens day

2008

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Special Needs Chilldrens day

2009

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Special Needs Chilldrens day

2010

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Conclusion

In 3 years of activity, sustained actions have

proven to be effective both for children with

rare diseases and their families, and volunteer

group participants.

We have the joy that our efforts be appreciatedby direct beneficiaries and general public

positive feedback, the media and authorities

which support us.

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And after a

lot of work

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Our best

reward is

a sincere

SMILE !

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VitroBioChemProfesionalism in tot ceea ce facem

Thanks tothose whohave

supported usand havemade possibleour actions :

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Thank

You!