EVENTS

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News-Announcements

Νέα - Ανακοινώσεις

 

* PETITION

Καλέσαμε το Υπουργείο Υγείας να επιστρέψει στο Υπουργικό Συμβούλιο ζητώντας να επανεξεταστεί και να εγκριθεί η παράταση επέκτσασης του Προγράμματος Ελέγχου Νεογνών, τηρώντας τις δεσμεύσεις του να εφαρμόσει το πρόγραμμα το συντομότερο.
 
Υπογράψτε την αίτηση κάνοντας κλικ στον παρακάτω σύνδεσμο. Στο πεδίο «όνομα» συμπληρώστε το πλήρες ονοματεπώνυμό σας
 
 
www.ipetitions.com/petition/expansion-of-cyprus-national-newborn-screening
 
(το petition ολοκληρώθηκε με επιτυχία στις 22 Αυγούστου 2022 όπου το Υπουργείο του Συμβουλίου ενέκρινε την επέκταση του προσυμπτωματικού ελέγχου νεογνών - περιμένοντας να τεθεί σε ισχύ)
We called  the Ministry of Health to return to the Council of Ministers asking to reconsider and approve the extension of the Newborn Screening Programme, keeping its commitments to implement the program the soonest.
 
Please sign petition by clicking on below link. On the field 'name' please fill-in your full name and surname
 
 
 
(petition suceeded on 22 August 2022 - Ministry of Council approved the expansion of the newborn screening - awaiting to come into effect)
July 2022 
 
 
Cyprus ranks as the last country which offers the lesser number of diseases monitored in its national newborn screening programme (NBS) throughout Europe, and this needs to change. Ministry of Health of Cyprus already committed to expand the program since February 2021 with additional 8 inherited metabolic diseases. Every day that passes without the expansion of the NBS means more infants are most likely to miss early diagnosis and suffer from an acute metabolic decompensation that can lead them with severe encephalopathic crisis, organ failures or even death. On the other hand with early diagnosis and prevention the patient can have a normal life.
 
Minister of Health himself informed us on 22/7/2022 on the birthday of the Folia Center of the the Cyprus Alliance for Rare Disorders that the extension of the expansion of the Newborn Screening Programme was not approved by the Council of Ministers even though it is already a Public Health program that is already running for 2 diseases and its expansion has been proven by other European countries that it will offer multiple benefits to Cyprus society as well as to the state. It is important to note that the population programs belongs to the Ministry of Health and their expansions should be considered as such.
 
We call on the Ministry of Health to return to the Council of Ministers asking to reconsider and approve the extension of the Newborn Screening Programme, keeping its commitments to implement the program the soonest.
 
Please sign petition by clicking on below link. On the field 'name' please fill-in your full name and surname
 
Thank you for your help, together we can!
 
Marios Vakanas - President of the Board
 
Christina Aristotelous - Secretary of the Board
 
 

Webinar Title - INBORN ERRORS OF METABOLISM: MORE KNOWLEDGE, BETTER FUTURE

Organizer: Association of Inherited Metabolic Diseases 'Aspida Zois' (Life Shield)

Co-organizer: Cyprus Pediatric Society

Link to register for participation: URL: https://aspidazois456.clickmeeting.com/iem/register

3 C.M.E points will be accredited by the CyprusMedical Association.

The conference is addressed to both health professionals and patients / patients' families/ Carers

Under the auspices:

Cyprus Alliance for Rare Disorders

Cyprus Dietetic and Nutrition Association (CyDNA)

Supporters

Lifepharma-Nutricia (MSJ Group)

Alma de Musica Music School

**The webinar will be recorded and will be live broadcasted on the Facebook page of Aspida Zois 

Certificate of attendance will be sent automatically solely to participants whom have registered to the URL below: https://aspidazois456.clickmeeting.com/iem/register
Please register by writing your name in Latin characters.
Join our live meeting by clicking on the link sent to your email inbox

 

 

 

 

Association Aspida Zois for patents with Inherited Metabolic Diseases, the University of Nicosia Medical School, the Association for Inherited Metabolic Diseases, and the Cyprus Paediatric Society invite you to the conference ‘Inherited Metabolic Diseases – New Developments’ on Satarday 13 Obtober 2018, Time: 14:00-19:00, Venue: M-203

On November 8, 2017, the "Aspida Zois" Association of Inherited Metabolic Diseases was invited by the International Center for Parliamentary Studies and participated in the Rare Diseases Europe Round Table 2017 in Brussels, Belgium. We would like to thank the RCB Bank for the financial support.

 

On 30/6/2016 Ms AMALIA DROUSIOTOU, MOTHER OF THE SCIENTIFIC DIRECTOR OF THE ASSOCIATION "ASPIDA ZOIS" DR. ANTHI DROUSIOTOU PASSED AWAY; HER FAMILY DECIDED A PART OF THE  MONEY  GIVEN BY PUBLIC ON THE FUNERAL TO BE GIVEN TO THE ASSOCIATION "ASPIDA ZOIS" AND THE COUNCIL OF WELFARE OF ARCHIEBISOP MAKARIOS CHILDRREN HOSPITAL IN NICOSIA. The FUNERAL WAS HELD AT THE HOLY CHURCH OF SAINT GEORGIOS IN AGIOS DOMETIOS at 4:00 PM ON FRIDAY 07.01.2016.

 

WE WOULD LIKE TO THANK THE FAMILY FOR THEIR CONTRIBUTION TO ASPIDA ZOIS AND EXPRESS OUR SENSIRE CONDOLENCES


BOARD ASSOCIATION "ASPIDA ZOIS"


Onine Pettitions of Association "ASPIDA ZOIS":

1. An agreement between the Ministry of Health and specialized center abroad for a) cathode specialist in Cyprus to monitor patients with hereditary metabolic diseases and b) training of a physician (pediatrician) and a dietitian on the hereditary metabolic diseases in the same center . You can sign the online petition to the association for this purpose on the website:

https://www.thepetitionsite.com/659/939/499/demand-cyprus-to-send-a-pediatrician-and-dietitian-to-get-trained-on-inherited-metabolic-diseases/#sign

2.  Petition request for 100% financial coverage of nutritional formulations for special medical purposes (FSMPs) is crucial as there are just supplements, but they provide the main source of nutrition for these patients as most foods are excluded from the diet because of the strict diet low protein that follow (no meat, no fish, no legumes, no dairy products, to name a few). It is an inalienable right of patients to have adequate, equitable access to health care, without additional financial burdens. Without the administration of the formulations of these patients can suffer malnutrition and this can lead to multiple and serious health problems. - You can sign the online petition to the association for this purpose on the website:

https://www.thepetitionsite.com/takeaction/400/934/182/#sign

 


3 MAY 2016 (11: 00-17: 00)

DAY SOCIAL NETWORKING

First Municipal Market of Lemesos (Pantopouleion)


The Municipality, as part of the actions of the program "Social Work Street" and the Multipurpose Centre Agios Ioannis Merciful, multidisciplinary exhibition organized social programs and volunteer groups active in Limassol, Friday 13/05/2016 at the First Municipal Market of Lemesos (Pantopouleion).

Through the report sought to networking and cooperation between institutions, with the aim of maximizing its recovery.

The exhibition was open to all public and particularly for social welfare professionals, students / only three schools humanities and social sciences, parents, teachers, guidance counselors and people who work or volunteer working in public or semi-public agencies and NGOs.

Guests / only three had the opportunity to talk with representatives of organizations involved including the Association of Inherited Metabolic Diseases "Aspida Zois"

19 MARCH 2015 (12: 00-18: 30)

Association Conference "Krikos Zois"

Byzantine Museum

Thessaloniki

Greece

krikoa zois press (Autosaved)-2.doc (561152)

 

3rd ANNUAL GENERAL MEETING AND ELECTION 2H GENERAL ASSEMBLY OF THE ASSOCIATION OF PATIENTS AND FRIENDS 12 DEKEMVRIOTH 2015


Dear Friends and Members of the Association "Aspida Zois"


We would like to inform you that Saturday, December 12, 2015 at 15:30 at the Institute of Neurology and Genetics was held the 3rd General Assembly and the 2nd Electoral General Meeting of the Association "Shield Life"

After the Electoral Assembly established the five-member Board elected, and we would like to inform you that the members making up the new board of directors are

President: Marios Vakanas
Vice President: Vasilis Prodromou
Secretary: Christina Aristotelous
Treasurer: Vaso Tikkou
Member: Giorgos Theodorou


Agenda regarding GA - December 12, 2015



15: 30-16: 00 Registration Members


16: 00-16: 15 Action Report of the Board


16: 15-16: 25 Information on the balance sheet of the Association and Presentation of Financial Statements


16: 25-16: 35 Future activities of the Association and Contributions


16: 35-16: 45 Discussion


16: 45-17: 00 Electoral General Assembly - Elections Board


TRANSLATION MANUAL "glutaric aciduria TYPE 1" ONE GUIDE FOR PARENTS AND PATIENTS - October 2015


This guide is based on the manual entitled "Glutarazidurie Typ 1 - Ein Leitfaden fur Eltern und Patienten" with the permission of the authors that appear on page 10 of the manual. The authors gave their approval for translation into Greek without being able to check the precision and accuracy of the translation.
Thank scientific team of the Department of Inherited Metabolic Nosimaton Hospital of Heidelberg, especially Prof. Dr. Stefan Kolker, the willing and heartfelt response to our request to be translated into Greek in this manual to make it accessible to many Cypriot children and Greek children suffer from glutaric aciduria type I.
We would also like to thank the Nationwide Alliance for Rare Diseases "CARD", and especially the Executive Director, Dr Androulla Eleftheriou, for the sponsorship for the translation and publication of this manual, as well as dear contributor Dr. Anthi Drousiotou and Dr. Persephone Avgoustidou Savopoulou the editing of this publication.
We hope this guide will be a useful tool that will help both patients and their parents and health professionals in the treatment of glutaric aciduria type I.


Marios Vakanas
Chairman of the Board of the Association of Patients and Friends of Inherited Metabolic Diseases "Aspida Zois"



08 July 2015 (19:00)

CDA Charity Fashion Show

Cultural Center Panos Solomonides in Limassol

"CREATE FOR LOVE"

The CDA College presents dimiourgeies of the branches Fashion Design, Interior Design, Beauty and Hairdressing, to support the Community Grocery Limassol and the Association "SHIELD LIFE" for patients with Hereditary Metabolic Diseases.

Propolis tickets priced at 10 euros. information 77770232

 

Aspida Zois @ CDA CHARITY FASHION SHOW

Posted by Aspida Zois on Wednesday, 8 July 2015

 

CDA CHARITY FASHION SHOW - ΟΛΑ ΤΑ ΕΣΟΔΑ ΣΤΟ ΣΥΝΔΕΣΜΟ ΑΣΠΙΔΑ ΖΩΗΣ ΚΑΙ ΣΤΟ ΚΟΙΝΩΤΙΚΟ ΠΑΝΤΟΠΩΛΕΙΟ ΛΕΜΕΣΟΥ

Posted by Aspida Zois on Wednesday, 8 July 2015

 

 
Click the link below to listen to the advertising spotlight

CDA COLLEGE FASHION SHOW 8.7.2015.mp3 (1295673)

 

29 MAY 2015 (12: 00-18: 00)

Low Protein Cooking Session

restaurant Karatello

Limassol

 

 

 

MARCH 21, 2015 (12: 00-18: 00)

Association Conference "Krikos Zois"

Olympic Museum (former Museum of Sports), Leoforos September 3 & St. Demetrios

Thessaloniki

Greece

14 MARCH 2015
Kings Avenue Mall, Paphos

EXPRESSION OF LOVE AND SUPPORT FOR PEOPLE suffering from rare inherited metabolic disorders ON SATURDAY 14 MARCH 2015 IN KINGS AVENUE MALL IN PAPHOS. START TIME 11:00 AM

 

10 MARCH 2015

EKPROSOPON MEETING OF THE ASSOCIATION "SHIELD LIFE" THE HONOURABLE MINISTER OF HEALTH, PROFESSOR DR. FILIPPOS Patsalas ON 03/10/2015

ANNUAL GENERAL MEETING

13 DECEMBER 2014
Institute of Neurology and Genetics, Nicosia

The Saturday, December 13, 2014 at 15:00 held at the Institute of Neurology and Genetics Annual General Meeting of the Association of Patients and Friends of Inherited Metabolic Diseases "Shield Life"

The day-long Layout issues were:

    Report Board actions

    Information on the balance sheet of the Association and Presentation of Financial Statements

    Future activities of the Association and Contributions

     Discussion

Attached

    Daily General Assembly Association Order "Shield Life" on 12.13.2014

ANNUAL GENERAL MEETING 131214.pdf (66276)

PANCYPRIAN PEDIATRIC CONGRESS

8-9 November 2014
Hotel Adams Beach, Ayia Napa

At the invitation of the President of the Paediatric Society Dr. Cyprus. To Association of Patients with Hereditary Metabolic Diseases "Life Shield" parevethike the festival to honor Agia Marina in Agia Marina Xyliatos in Nicosia Wednesday, July 16th 2014. The association "Shield Life" sale of hand-made and dishes for assistance from the Fund of.

EKPROSOPON MEETING OF THE ASSOCIATION "SHIELD OF LIFE" WITH REPRESENTATIVES OF THE MINISTRY OF HEALTH ON 06/27/2014

On June 27, 2014 at 15.30 a meeting of representatives of the Association of Patients and Friends of Inherited Metabolic Diseases "Shield Life" with the Ministry of Health representatives.

The meeting was attended by Minister of Health Dr. Olga Kalakouta. On behalf of the Association of Patients and Friends of Inherited Metabolic Diseases "Shield Life" was attended by: Dr. Anthi Drousiotou (Scientific Consultant Association and Director of Biochemical Genetics Department at the Institute of Neurology and Genetics), Marios Vakanas (Association President), Christina Aristototelous (Club Secretary), Vaso Ttikkou (Association Treasurer).

The meeting highlighted the need to create infrastructure for Hereditary Metabolic Diseases and the creation of clinical Inherited Metabolic Diseases, debate on the need sponsorship medical amino acid preparations to be administered to patients with RMN and disposition of drugs in patients by RMN of the medical services. also discussed the need for expanded neonatal control the RMN since currently only Fainlketonouria check with neonatal testing all RMN present (> 500), and epanatonisi necessity clinic Inherited Metabolic Diseases to be able to manage apotelesmaika incidents will diagnozontai with neonatal testing.

FEAST FOR PRICE OF SAINTS HARMLESS TO Kivides LIMASSOL - 27/04/2014
 


On 21 March the Association "ASPIDA ZOIS" has been approved as a member of the European Organisation for Rare Diseases "EURORDIS '

 

THE CLUB "SHIELD LIFE" HAS BECOME THE THN HIGH PROTECTION OF FIRST MAIN ANTRIS ANASTASIADI ON 20/03/2014

On March 20, 2014 at 10:30 a meeting of representatives of the Association of Patients and Friends of Inherited Metabolic Diseases "Shield Life" with the First Lady Andri Anastasiades



On September 27, 2013 at 18:30 successfully held the Annual General Meeting of the Association of Patients and Friends of Inherited Metabolic Diseases "Shield Life" for the year 2013 with a quorum of members of the Institute of Neurology and Genetics.

The first General Assembly have parevrethei 26 persons have sent proxies 19 members defining their dealer. Total attendance (including members who have sent proxies): 45 people

OBJECTIVES RAISED IN THE GENERAL ASSEMBLY OF THE ASSOCIATION OF PATIENTS AND FRIENDS inherited metabolic disorders "ASPIDA ZOIS"

    Arranging a meeting with relevant government agencies to analyze the association requests
    leaflet bulletin on disclosure of Association, the objectives and the demands of
    Conference Planning for autumn 2014