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International Day of Rare Diseases


Serbia will celebrate for the first time  28 of February as an International Day of Rare Diseases. European organisation for rare diseases – EURORDIS – established this Day in 2008 with aim to raise awareness on rare diseases, their consequences and barriers persons with this diseases faced with.

Due to this Day, National Organisation of DPOs in Serbia with Ministry for Labor and Social Policy and Association of Dystrophics of Belgrade organise press conference on Friday, 27 of February. Conference speakers will be  representative of the Conference organisers.

Rare disease is the one which incidence is less than on on 2 000 persons, but it is neccessary to point out that there is a line of diseases which incidence is one on several hundreds of thousands or even one in few million citizens. It is estimated that there are between 5.000 and 8.000 rare diseases in the world today, that influence on physical and mental abilities (muscular dystrophy, cerebral paralyse, hepatitis B and C, autism, blood cancer, existing in Serbia as well. Every week it is discovered five more rare diseases.

Some of common characteristics are the facts that public awareness of rare diseases is very low,  that 80% of their has genetic code, that at 50% of diseases first symptoms appeares at birth or in early childhood, that the wrong diagnoses are very often as well as inadequate therapies which has bad impact not just on persons suffer from these diseases but also on their families. Most of these diseases has permanent disability as final result and persons suffer from that diesases have need for high level of social support and very often feel isolated and excluded from the society.


26.02.2009

All news:

Second seminar in Mataruska banja
Disability Convention Receives 100th Ratification
ROUND TABLE
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PRO LIBRIS
A PLACE FOR US
Law for social protection
TRIBUNE “EDUCATION FOR ALL”
PLACE FOR US
Kampaign for Inclusive Education
EU RATIFIED CRPD
Good finish of 2010
THE BEST POSSIBLE NEW YEAR WISH COME TRUE
Advocacy for PA service in Novi Beograd
Comissioner for equality protection
International Day of Persons with Disability
Summer School
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REGIONAL ROUND TABLE DEBATE
The Invisibles: disabled people in Britain
Organisations of Civil Society as service providers in social protection area
Mexico in Debt to the Disabled
Fourth workshop on CRPD
SERBIAN CANDIDATE IN UN COMMITTEE
Virtual Career and Education Day expands regionally!
Center for employment of persons with disability
LEGAL HELP TO FAMILIES OF CHILDREN WITH DISABILITY
New initiative in Bor
CIL Activities
Promotion of project „Support to independent living of persons with disability in Serbia”
Special Advisor for International Disability Rights
Third workshop on monitoring and implementation CRPD in Serbia
Second workshop on monitoring and implementation CRPD in Serbia
Educating Students with Disabilities: Some Say It's Not Worth It
Workshop on monitoring and implementation CRPD in Serbia
HUMAN CAMERA
INFORMATION BULLETIN - European Court of Human Rights upholds the right to vote of persons with disabilities
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ENIL calls for an end to Death by Social Indifference
Four more countries ratify CRPD
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SEMINAR IN NIKSIC, MONTENEGRO
CIL in Belgrade too
We have our lives back
JOBS FOR ALL
MD persons continue hunger strike
Call for 140 financial support for 140 students with disability
Council of Europe calls for deinstitutionalisation of children with disabilities
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“Incredible stories of invisible lives” exhibition in Uzice
Draft of Law on Social Protection
30 years United Nations Convention on the Elimination of All Forms of Discrimination against Women
Opening Conference of the European Year for Combating Poverty and Social Exclusion,
The sky's the limit for disabled athletes in Serbia
CRPD Ratifications reach 76
Round table "Development the advocacy capacities of organisations of persons with disability in Serbia"
With Parthership Towards Development
FREE OUR PEOPLE NOW!
COMMEMORATING THE INTERNATIONAL DAY FOR THE ELIMINATION OF VIOLENCE AGAINST WOMEN
Center for Disease Control and Prevention, USA
Persons with disability in politic life everywhere
ENIL has 777 members in Facebook
Disability and policy
„Love and Kindness“ Fund
New ratifications
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„A Midnight Summer Dream“
Court Cases filed in the Name of Persons with Disability
Freedom Drive 2009 - Demands
INFORMATION FOR PEOPLE WITH DISABILITIES ABOUT H1N1 VIRUS
My world has changed – two stories in one
European Citizen Award
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First deaf Member of Parliament is sworn in
Letter to Prime Minister Cvetkovic
PA Service in Leskovac too
International Day of Persons with Disabilities - 3 December 2009
MIDWAY
New TV broadcast
Malta: MOTE - My Opinion My Vote
Access to persons with disability
„CLOSER TOGETHER“ PROJECT
SERBIA RATIFIED UN CONVENTION
Court case dealing with UN COnvention in Germany
Europe Day
Convention sign-ups
WHY SHOULD EUROPE INCREASE THE MATERNITY LEAVE?
Learning disability genes found
Poland: Disabled People Excluded from EU Elections
International Autism Day
Coucil for persons with disability
My right to be healthy
NEW RATIFICATION
International Day of Rare Diseases
PERSONAL ASSISTANCE BILLS
Disability Equality: Promoting Positive Attitudes
SERVICE IN JAGODINA
White House launched a new website today and disability issues are highlighted under the Agenda heading
Conference on Cooperation for Improvement of Disability Policy in Serbia
Workshhop on CRPD
First Committee of Experts on Disability Rights Convention Elected
GREAT SUPPORT TO ANTONIJEVIC FAMILY
Parking for everyone
Electoral rights for PWDs in Albania
Petition
The ways of integration
Finding a College That Suits Students “With Special Needs”
Another silver medal for Serbia
Paralympic silver
The Annual march for Disabled Visibility in Madrid
Good Practise/Bad Practice
UN Convention on the Rights of Persons with Disabilities (CRPD)
Free our People!
All... but not retard.
European Day of Disabled People 2008
Parents' fury at 'Down's Syndrome dolls'
Eurobarometer on discrimination
Less sex, less fun
Coming Soon, a Braille Silver Dollar
Roads to integration
Disability proves no barrier to Olympic inclusion
Media and Disability
Media and disability
Bishop
Are there any changes in preparations for Paraolympics?
U.N Issues Stamps to Commemorate Disability Treaty
Beijing 'sorry' for offending disabled
Government unveils new package for disabled children
China Sets Gold Standard in Offending Disabled
Smederevo Coalition
Way to Independence
On Empowerment
Assistive Technologies
Press Conference
Wishes could come true
Seminar on reforms of social protection system
National Conference on Gender Equality
Mobility International Seeks Young Adults
Wal-Mart settles with applicant with disability [USA]
First Contestant with a Disability to Compete for Miss USA Title
INFO - CENTER
INACCESSIBILITY IS DISCRIMINATION!
UN Convention on PWDs rights
Conference on National strategy for Youth
Bits and pieces from Slovenija
Meeting with Bozidar Djelic
Focus group “Social services for PWDs“
SHARE SEE Grantee Training
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It's Okay to Stare... Then Engage a Question!
Sombor hosted workshop "sex, gender, disability"
Dancing Beyond Disability
Seminar HUMAN BEING AND ITS ENVIRONMENT
Project From Alternative to Standardisation
The regional group of experts in social service provision for people with disabilities
Youth Regional conference
Are we going to Europe?
Disability Guide to Disneyland Paris
POI Conference "From cause to the result: New approaches towards disability"
Open Letter to the Government, Members of National Assembly Competent Institutions and Policy Makers
Centre plan for disabled actors
An Autistic Dream
MEETING ON DISABILITY ISSUES IN SERBIA
A PARAGIDM SHIFT FROM 'CHARITY' TO 'RIGHTS AND DIGNITY'
Transport benefits
New Visa rules
Disabled rights champion honoured
Map of the World



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