ΕΚΔΗΛΩΣΕΙΣ

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Νέα - Ανακοινώσεις

ON 30/6/2016 died or CAIR. Amalia Drousiotou, MOTHER OF THE SCIENTIFIC DIRECTOR OF THE ASSOCIATION "ASPIDA ZOIS" DR. ANTHIS Drousiotou. FAMILY DECIDED AS ANTI wreath MADE CONTRIBUTIONS TO THE ASSOCIATION "SHIELD OF LIFE" AND THE COUNCIL OF WELFARE PATIENT HOSPITAL NICOSIA Makarios. The FUNERAL WAS IN HOLY TEMPLE OF SAINT GEORGE IN MOUNT Dhometios at 4:00 PM ON FRIDAY 07.01.2016.


GOOD HEAVEN AND ETERNAL OF MEMORY.


BOARD ASSOCIATION "SHIELD OF LIFE"


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:

http://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:

http://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. Michael Iasonidis, the Association "Aspida Zois" was attended in Cyprus Paediatric Conference, where informing pediatricians which was attended for the actions of the Association "Aspida Zois" and distributed informational materials of the Association


CONFERENCE inherited metabolic disorders WITH EMPHASIS ON GLUTARIC ACIDURIA TYPE I

October 18, 2014
Auditorium Institute of Neurology and Genetics

Organizers: Association of Patients and Friends of Inherited Metabolic Diseases "SHIELD LIFE" &
Biochemical Genetics Department, Institute of Neurology and Genetics

Auspices: Paediatric Society Cyprus
& Pancyprian Alliance for Rare Diseases "CARD"


FEAST FOR PRICE OF SAINT MARINA, THE SAINT MARINA Xyliatos (NICOSIA DISTRICT) TO 16/07/2014

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

To Patient Association with Hereditary Metabolic Diseases "Life Shield" parevethike the village feast Over Kivides in Limassol where the memory of the Saints honored Akindinon Sunday, April 27th 2014. The association "Shield Life" sale of various kinds to strengthen the fund.

INFORMATION COMMISSION HEALTH OF THE HOUSE FOR THE IMPLEMENTATION OF THE NATIONAL STRATEGY FOR RARE DISEASES - 04/03/2014

 

On 03 April 2014 the Association "Shield Life" was attended by the House and sent a memorandum to the CARD and in the House Health Committee to update the link requests (Ref. Fak. 23.07.012.001) on Chance update the committee on national ylopoioisi strategy for rare diseases.

The meeting was attended and Dr. Violet Anastasiadou (Pediatrician and Clinical Geneticist at Makarios Hospital and Institute of Neurology and Genetics) which referred to the problems faced by patients with rare diseases.

On behalf of the Association "Shield Life" was attended by Marios Vakanas (Chairman) and members Maria Telemachus and Pantelita Vakana.

The Association "Shield Life" has emphasized the Parliamentary Health Committee stating that:

- Regarding new hospital cards, the criteria for the list of beneficiaries of patients is unclear

- In an agreement with a specialized center abroad for a) cathode specialist in Cyprus 2-3 times a year to monitor patients with hereditary metabolic diseases and b) training of a physician (pediatrician) and dietician on the hereditary metabolic diseases in the same center .

- The Free Medical Care for patients with RMN, including various food formulations which in most RMN are the essence of ill treatment of children and it is necessary for their normal development.

Attached

    
Agenda Parliamentary Health Committee on 03.04.2014

Parliament 030414.pdf (665925)

"ASPIFDA ZOIS" IS A MEMBER OF EUROPEAN-WIDE ALLIANCE FOR RARE DISEASES "EURORDIS '


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

The meeting discussed the aims and demands of the Association of Patients and Friends of Inherited Metabolic Diseases "Shield Life" and the Association "Shield Life" is placed under the high protection of the First Lady.

On behalf of the Association "Shield Life" was attended by Dr. Anthi Drousiotou (Scientific Consultant Association Shield Life and Director of Biochemical Genetics Department at the Institute of Neurology and Genetics), Marios Vakanas (President Association Shield Life), Christina Aristototelous (Secretary Association Shield Life), Vaso Ttikou (Treasurer Association Shield Life)


EKPROSOPON MEETING OF THE ASSOCIATION "SHIELD OF LIFE" WITH THN COMMISSION HEALTH OF THE HOUSE ON 24/10/2013

On October 24, 2013 at 11:20 a meeting of the Association of Patients and representatives of Friends of Inherited Metabolic Diseases "Shield Life" by the House Health Committee. (Ref. Fak. 23.07.012.005) under the chairmanship of MP Mr. Costas Constantinou

The meeting was attended and Dr. Violet Anastasiadou (Pediatrician and Clinical Geneticist at Makarios Hospital and Institute of Neurology and Genetics) which supported the demands of our Association.

On behalf of the Association "Shield Life" was attended by Dr. Anthi Drousiotou (Scientific Consultant Association Shield Life and Director of Biochemical Genetics Department at the Institute of Neurology and Genetics), Marios Vakanas (President Association Shield Life), Christina Aristototelous (Secretary Association Shield Life), Outstanding Aristokleous (Member of Shield Life Association).

The meeting discussed the aims and demands of the Association of Patients and Friends of Inherited Metabolic Diseases "Shield Life" with assurances of Members for further monitoring of discussion topics for realization of the demands of

EKPROSOPON MEETING OF THE ASSOCIATION "SHIELD OF LIFE" WITH REPRESENTATIVES OF THE MINISTRY OF HEALTH ON 18/10/2013

On October 18, 2013 at 14:30 a meeting of representatives of the Association of Patients and Friends of Inherited Metabolic Diseases "ASPIDA ZOIS" with the Ministry of Health representatives.

The meeting was attended by the Ministry of Health Dr. Olga Kalakouta and Dr. Myrto Azinas. On behalf of the Association of Patients and Friends of Inherited Metabolic Diseases "ASPIDA ZOIS" 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 discussed the aims and demands of the Association of Patients and Friends of Inherited Metabolic Diseases "ASPIDA ZOIS" with the assurances of the Ministry of Health officers for further monitoring of discussion topics.

ANNUAL GENERAL MEETING ASSOCIATION OF PATIENTS AND FRIENDS inherited metabolic disorders "ASPIDA ZOIS ON 09/27/2013

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