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AELIP was present at the X edition of the CREER-FEDER Training School that took place in Burgos on October 19 and 20 and also had the presence of Her Majesty the Queen.
In addition, AELIP was able to present in poster format the conclusions of the international cooperation action carried out during 2018 and 2019 in Peru.
These Days on Good Practices in Rare Diseases promoted by the Spanish Federation of Rare Diseases (FEDER) and the State Reference Center for Care for People with Rare Diseases and their Families (CREER Center), under IMSERSO.
under the motto 'Rare diseases, an integral challenge, a global challenge'
Doña Letizia attended the exhibition of good practice posters and met the facilities of the CREER Center.
In this edition, AELIP was able to learn about the experience of experts from Europe and Latin America through the round table on advocacy 'Social transformation in rare diseases' together with more than 60 representatives of Spanish patient organizations.
In this way it was possible to know the initiative of the associative fabric that crosses borders to place rare diseases as a priority before organizations such as the United Nations.
With objectives such as this, alliances such as the European (EURORDIS), Ibero-American (ALIBER) and international (RDI) work to address the common problems of the 350 million people that, it is estimated, coexist with these pathologies throughout the world.
Among them, in addition, there are global challenges that have yet to be addressed, such as “the difficulties experienced in other parts of the world where there is still no consensus on the definition and codification of rare diseases,†in the words of Juan Carrión, President of ERDF and its Foundation.
The day served to highlight all the achievements made to date in «a very special moment for both FEDER and the CREER Center, as both entities celebrate their twentieth and tenth anniversary, respectively»
In this special meeting and together with Doña Letizia, the associative fabric was accompanied by representatives of the administration such as Ana Isabel Lima Fernández, Secretary of State for Social Services of the Ministry of Health, Consumer Affairs and Social Welfare.
Among the initiatives presented is the Casa Do Marco;
a specialized center unique in Portugal;
The Center for Complex Diagnostics of Norway, or the Center for Rare Diseases of Romania NoRo, which has been responsible for landing in 2018 a pilot model of care on the management of cases for rare diseases.
This day of good practice also looks to the future.
In this area, the role played by patients in the investigative process will be analyzed in greater depth, where “they are configured as a source of data banks and records, but also recruit patients for clinical trials, intervene in committees and even finance projects »
Precisely as an example of this, this space served to highlight how pioneering and sustainable models of project financing have been promoted from the associative fabric, as well as unique initiatives for unique cases: such as those without diagnosis.
A group that, from the United Kingdom, has managed to project its action from the national to the continental.
In short, the Spanish organization and the CREER Center have organized "a unique and pioneering space in our country to date," said FEDER President Juan Carrión Tudela.
Source: AELIP
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