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Our activities

Patronage on the Forbes
Magazine "Forbes" took over the patronage of the Foundation's activities. Founded on July 11, 2011 the Foundation initiates and supports the innovative methods of treatment, with particular emphasis on treatment Mucopolysaccharidosis. Mucopolysaccharidosis (MPS) is a group of hereditary genetic diseases, which causes a lack of or a large shortage of activity one of the enzymes necessary for the degradation of complex sugars. The disease is progressive and is lethal. Mucopolysaccharidosis is located in the most heavily investigated disease hereditary. Until recently there were possibilities of treatment suffering from MPS. In Poland, the incidence of this disease is 1: 42 000 live births. Foundation by decision of the President of the Commission Rare Diseases set up by the Ministry of Health, is the only representative of the people for MPS to talks with the Government on the recommendation of the EU fit for the establishment of a National Plan for rare diseases in Poland.
Source of the "Forbes" 01/2012

Central Eastern European Genetic Network
In Brussels on 28-29 November 2011 thanks to invitation from Ysbrand Poortman (the organizer and member of many patients organizations) the Foundation has the pleasure to attend the three meetings of the working of different patients organizations. 28th of November we participated in the meeting organized at the EFGPC www.efgcp.be at the meeting were discussed new projects to prepare the EFGCP. How to use the tele-medicine and training projects for groups of patients in order to improve the quality of life of people with the genetic disease. 29 th of November in the morning we participated in a meeting held at the headquarters of 
EPPOSI's Managing Director Jacqueline Bowman-Bustao www.epposi.org EPPOSI is the largest organization in Europe. This is the organization based on the agreement of patient organization, organization of scientific and industrial. In both meetings have repeatedly pointed to the need to strengthen the voice of CEE GN. Its mean patients organizations, which in cooperation with scientific and medical devices with parts of Central and Eastern Europe would have the opportunity to present their own proposals and to provide common requirements on the development of research and the availability of treatment rare diseases.
Then we participated in a meeting workspace, EFPIA Patient Think-Tank. The meeting was held at the headquarters of the EFPIA in Brussels www.efpia.org EFPIA is the European Federation of Pharmaceutical Industries and Associations, the European Federation composed of the representatives of the medical industry and the patients organizations of Europe. At the meeting, in addition to the members of EFPIA were present representatives of groups of patients such as: EGAN, EUFAMI, EFCCA, European Institute of women's Health CEE Genetic Network or European MS Platform. Here ist the list of participants. At the meeting were discussed the social aspects. Current topics are discussed in order to understand and improve the communication of patients organization between the EFPIA for background policy and adopted the EU strategy on the improvement of the quality of live for people affected by genetic diseases. The list of participants is attached here.

CEE GN is a coalition of patients, family support groups and individuals, working together with scientists and industry to support people with common and rare genetic and congenital conditions and their families in countries of Central and Eastern Europe.CEE GN is a coalition of patients, family support groups and individuals, working together with scientists and industry to support people with common and rare genetic and congenital conditions and their families in countries of Central and Eastern Europe. CEE GN aims to raise awareness of the needs of these people and organisations, and to promote medical genetic services, research, technologies and access to medical treatment in order to alleviate the burden of genetic conditions for individuals, families and communities, and to improve the quality of life of patients and their families.CEE GN aims to raise awareness of the needs of these people and organizations, and to promote medical genetic services, research, technologies and access to medical treatment in order to alleviate the burden of genetic conditions for individuals, families and communities, and to improve the quality of life of patients and their families. CEE GN was founded in October 2003 in Cavtat, Croatia, at a meeting where representatives from 8 central and eastern European countries were present.The network is currently preparing for registration in Hungary as a non-profitable organisation, and will be headquartered in this country. The network is currently preparing for registration in Hungary as a non-profitable organization, and will be headquartered in this country. CEE GN is focused on understanding the common needs of patients with genetic diseases and their families in order to improve the medical care these patients receive consistent with the level received in other EU countries. CEE GN welcomes collaboration with organizations, institutions and societies which can contribute to achieving it's goals.CEE GN welcomes collaboration with organisations, institutions and societies which can contribute to achieving it's goals. CEE GN is the member of the European Genetic Alliances Network (EGAN) More information see http://www.ceegn.org/ Source: the Foundation 01 December 2011

The foundation, together with a group of therapists is developing a programme including physiotherapy, massage, swimming pool activities, activation activities, sensory path and speech therapy in order to improve the quality of life of our children. The programme contains also activities to be conducted at home by parents – the development of a set of exercises with appropriate equipment.
Source: the Foundation 31 October 2011

Our foundation has been invited to participate in meetings with the Commission for Rare Diseases taking place in Centrum Zdrowia Dziecka in order to represent patients affected by mucopolysaccharidosis.
Source: the Foundation 27 July 2011

The "Knowing How to Help" Foundation has been a supporting member of the National Forum for Treatment of Rare Diseases. The National Forum is an umbrella organization including 11 associations and 3 foundations and is the only representative in the talks with the government concerning the guidelines for the National Plan of Treatment. More information on www.rzadkiechoroby.pl 
Source: the Foundation 12 July 2011



   
© Przemysław Racinowski