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2011
The Greek Alliance for Rare Diseases (PESPA) announces the International Day for Rare Diseases February 28, 2011, which is under the auspices of HE President of the Republic Mr. Karolos Papoulias.
The main purpose of World Day for Rare Diseases is to focus on informing the public about rare diseases and their impact on patients' lives, as well as the highlighting their seriousness as a priority of health issues.
The theme of World Day for Rare Diseases in 2011 is: "Rare but Equal" and the opportunity to indicate large differences in the treatment of people with rare diseases in respect to the access to health care and social services.
Organized in each country by the National Associations of Rare Diseases, which are members of EURORDIS (European Organisation for Rare Diseases), this day helps to provide information on the threatsof the life and the needs of patients who suffer from them.
"The existing gaps in health between and within countries across the world have increased even more among people with rare disorders. It is our responsibility to encourage all patients' equal access to the best care regardless of their condition and place of residence, "said Director General of EURORDIS, Yann Le Cam.
These rare disorders are chronic, developmental, degenerative and often fatal with high levels of pain. There is currently no cure for 6.000 to 8.000 Rare Diseases, of which 75% affect children.
In our country there are about 1,000,000 people living with rare diseases without the required statutory support and infrastructure. Research, scientific knowledge, treatment, and social insurance coverage is incomplete and therefore absolutely necessary.
On the occasion of this day will be held:
Speech by Professor of Cancer Prevention and Professor of Epidemiology at the University of Harvard, Mr. Dimitrios Trichopoulos, Member of the Greek Academy of Sciences, Hall Old House, on Monday, February 28, 2011 at 19:00.
Retrospective Exhibition of Paintings by Katerina Lambrou, at the Cultural Center of Athens, the Chamber Kontoglou (Opening: February 21, 2011 at 19:00 Duration to 28 February 2011). The exhibition will be introduced by writer John Xanthoulis.
At the opening of the exhibition will participate Pantelis Thallassinos at Anthony Tritsis auditorium. The income from the exhibition will be placed on the National Association of Rare Disorders and the Greek Society of Tuberous Sclerosis.
Information: National Association of Rare Diseases (PESPA)
Contact Telephone: +30 210 7660989, fax +30 210 7660991
Timothy 99-101, 162 32 Athens.
Greek EUROPLAN Conference Final Report 7 January 2010
2010
INVITATION
02.12.10
The Ambassador of the Republic of Poland Dr. Michal Klinger
and the Mayor of the Municipality of Melissia Mr. Manolis Grafakos
in co-operation with:
the President of Make-a-Wish Hellas
Mrs. Gabriela Kalini Petsetakis,
the President of the Greek Alliance for Rare Diseases (PESPA)
Mrs. Marianna Lambrou,
and the President of Fashion Targets Breast Cancer Hellas
Mrs. Marilena Sotiropoulou,
are kindly inviting you for the opening ceremony of the art exhibition
under the title of “One World” by
BOZENA OLAK
at the Art and Culture Centre of Melissia (15, 17th November Str., Melissia)
on Friday 10th of December 2010 at 20:00
The exhibition is open on the 11 & 12 of December 2010,
Opening Hours 10:00-21:00
A substantial part of the sales will be dedicated to the above mentioned co-operating organisations.
2009
Conference Programme
«Rare Diseases involving the Hemopoietic System – News on therapeutic approaches»
11 & 12 December 2009
See
the program here
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the poster
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invitation
Our sponsors
Press Release
The General Assembly and Conference
of the European Organization for Rare Diseases (EURORDIS)
Athens 8 & 9 May 2009
The Greek Alliance for Rare Diseases as a member of EURORDIS co- organizes the General Assembly and Conference of EURORDIS here in Athens at the Eugenides Foundation on the 8th and 9th of May 2009.
The main items of discussion of the Conference will concentrate on “No Policy without the patients” as well as “How the new European legislation and the implementation of action plans for rare diseases will help substantially the quality of life of the patients”.
Other aims of the Conference are to exchange points of view with reference to the National plans of Action for the Rare Diseases; meeting with other interested parties and participation of the seminars.
At the same time we have the opportunity to promote our information in relation to Rare Diseases and its effects on the life of the patients as well as promoting the seriousness of this as a priority in health matters.
Representatives from patient organizations for Rare Diseases from all member of the European Union will take part at the Conference, approximately 200 – 250 people. It’s a special honour for us that after the General Assembly Ms May Papoulia, Psychologist, wife of the President of the Hellenic Republic, will give the opening speech at the congress meeting on Friday at 14:00.
Also the Member of the European Parliament, Prof. A. Trakatellis responsible for Rare Diseases at the European Parliament will be actively participate in the Conference.
On Saturday, the following 4 seminars will take place: On line communication, Patients and Diseases Registry, Help line and The Presentation of the new European Programme POLCA.
Informatively we quote that there are about 8.000 Rare Diseases and in our country there are approximately 1.000.000 people who suffer from a Rare Disease without any institutional support.
At the same time the scientific knowledge of the subject, the treatment, as well as help from social security is limited. Relevant support for research on this subject is lacking.
2008
Press Release
February 29th, 2008
The first Rare Disease Day February 29th 2008 is the first Rare Disease Day in Europe and beyond. This is the first time patient groups from different countries and representing a variety of diseases are collaborating on a large-scale awareness-raising campaign in favour of rare diseases. Greek Alliance for Rare Diseases participates by organizing:
More information: Mrs Lambrou +30 210 7660989, +30 210 766099
Message by Mrs May Papoulia for the European Rare Disease Day Let the 29th of February 2008 be a starting point that marks more wide-ranging dissemination of information about a group of people who live under extremely difficult conditions; people suffering from rare, chronic diseases. I believe that the fight should be a substantive and coordinate one; a fight to develop a shared sense of awareness, and to awaken national and international organisations to their needs. Achieving greater access to information and to treatment, promoting pharmaceutical research and improving the quality of life for patients and their families should be priorities for all of us. This is an act of social responsibility; an act which will send out a message of solidarity and support to our fellow citizens suffering from such diseases. |
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2006
PRESS RELEASE
On the 23 rd and 24 th of November 2006, the Greek Alliance for Rare Diseases (GARD) is organising a congress at the National Research Foundation in Athens, under the auspices of the Greek Ministry of Health and Social Solidarity. The subject of the congress will be “Childhood - Rare Diseases – Orphan Drugs”.
There will be oral presentations from distinguished Greek scientists as well as from delegates from patients' organizations, Eurordis (European Organization for Rare Diseases) and governmental organizations.
The congress is aiming at informing both, the Greek society and the scientific community, about rare diseases and their peculiarities, as well as about the problems that the patients and their families face. There will also be a reference on orphan drugs – drugs related to rare diseases, which are not widely distributed on the market – as well as on the relevant legislation of the EU, in relation to the existing or non existing legislation of our country.
During the congress informative material will be available.
Telephone: +30 210-7660989
Telephone/fax: +30 210-7660991
Mobile telephone: +30 697-4003282
Email: gr-pespa@otenet.gr
Website: www.pespa.gr
Congress Sponsors
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Awareness Day for Rare Diseases in Athens “Rare but not alone!” With this motto the Greek Alliance for Rare Diseases organised for second year, an open event in the Constitution Square, the most central location in Athens, on 27th of May 2006, under the auspices of the Ministry of Public Health and Social Affairs and also the Municipality of Athens. It aimed to inform and alert the public about rare diseases. During the event, that lasted from 10p.m. until 7.00a.m., from our specially formed kiosk, we handed out informative material for Greek Alliance and other patients Associations, while scientists-members of our Alliance were giving answers to the public. At the same time, it was a great opportunity to promote Eurordis scope and explain to Greek people which is Eurordis and its role in the EU.
Blue and yellow balloons with names of rare diseases were released symbolically, while many of others were shared to the children among with jugglers that enthused everybody. The interest of people was evident, and very important was the contribution of Media: television, radio and relative publications in the Press. After a short calculation around 3000 people passed from there. The general requirement of public was that such type of events should be repeated more often.
Sponsors ACTELION PHARMACEUTICALS HELLAS AE. ARRIANI PHARMACEUTICALS C.A. GENESIS PHARMA JANNSEN CILAG SANOFI – AVENTIS Mc DONALD'S
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