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D'Genes and AELIP were present at the official event held by the ERDF in Madrid on the occasion of the World Day of Rare Diseases (03/03/2017)

The Association of Rare Diseases of Genes and the Association of Relatives and Affected Lipodistrofias (AELIP) were present at the official event that the Spanish Federation of Rare Diseases (FEDER) celebrated yesterday on the occasion of the World Day of Rare Diseases, under the Motto "Research is our hope".

"The only way to generate hope and give strength to the struggle of those affected is scientific research."

With these words addressed Her Majesty the Queen to the more than three million people who live with a rare disease in Spain.

During the event, which took place at the Prado Museum, Doña Letizia wanted to convey a message to the associative movement "I have often seen the implacable and serene, imperturbable, almost always, commitment that you keep always ready to get every person who suffers A rare disease, that every family, have a better life, more dignified, easier.It is logical to admire them for that.If you hurry me, the natural.We must go beyond admiration.And that's why we are here today "

In this way, the Queen, together with the rest of the authorities, institutions, private entities and associations, emphasized the importance of research on infrequent diseases in this event, which was the final step in the Campaign for World The Rare Diseases that the Federation has promoted in the month of February.

For her part, the Minister of Health, Social Services and Equality, Dolors Montserrat, said that "research is our great hope, one of the main assets we have so that the care we provide to patients and their families is better every time".

Likewise, Montserrat announced that at the next Interterritorial Council of the National Health System will present to the autonomous communities the manual of procedures of the State Registry of Rare Diseases.

In this line, during her speech the minister announced the establishment of a collaboration agreement between the ISCIII and the Federation with the objective of working together and boosting research.

The president of FEDER and its Foundation, the totanero Juan Carrión, opened the act transmitting the need to promote research on infrequent diseases in response to the most urgent problem of people with RE.

In order to do this, he highlighted the proposal that, since the beginning of the World Day Campaign, the ERDF has been requesting: "We consider it essential to establish an incentive system that includes scientific research on rare diseases as a priority patronage activity within the Law of General State Budgets Because scientific research in RE is the door to the progress of our country and invest in it is the responsibility of all of our leaders, the entire business and social sector and of course the associative movement. Because, in short, RE is a challenge that we must address together. "

In this way, the President of the Federation called for effective coordination of all sectors involved and stressed the leading role of people with RE and their families in the research process.

"In addition to promoting, on many occasions, the search for financing for the viability of projects, we are a crucial element in the promotion of key actions. Through our associations we work tirelessly to motivate the creation of records, the designation of CSUR, The detection of needs for the development of therapies, recruitment of the sample or the impetus of clinical trials. "

Precisely as an example of leadership of the associative movement, the event was attended by two testimonies that shaped the struggle of families for research on rare diseases.

Specifically, with Eva Camenforte Martínez, suffering from Lysosomal Acid Lipase Deficit, mother of two girls with the same disease and member of AELALD, and Mª Belén Zafra García, mother of a child with SanFilippo Syndrome and founder of the Sanfilippo Association Barcelona.

For her part, Alba Ancochea, director of FEDER and its Foundation wanted, within the framework of the act, to make a photograph on the current state of the research.

To do this, Ancochea wanted to put names and surnames to agents who are currently involved in investment in research.

"At the European level we highlight the eighth framework program on Research and Technology, Horizon2020 and whose participation by Spain is necessary to encourage. Funds that have been enhanced through Platforms such as the International Research Consortium in ER or calls such as E- Rare, which promotes the cooperation of countries around different research projects. On the other hand, at the national level, the main source of funding originates in the Carlos III Health Institute, through the Convocation of Strategic Health Action and CIBERER and complemented by the call for aid for personalized medicine projects, but there are other CIBER groups that are not specific to ER, but also have projects for these pathologies, as well as other organizations such as MINECO or the research agencies of some communities As a result of these efforts, there has been an exponential growth that has brought important results in recent years.

Specifically, we currently have two specific structures that are key players in the research: the aforementioned CIBERER and the IIER, which among other projects, leads with determination and also heart, the State Register or the Biobank of ER.

Ancochea, however, conveyed that "the high cost of ER research means that many projects require funding from private entities. In recent years, specific calls have been made by Social Projects, Foundations and Patient Organizations , Which add to the efforts of the pharmaceutical industry to encourage the development of new medicines. "

That is why, Ancochea stressed the need to establish incentives that continue to promote the investment of research in RE.

"We want to motivate the development of a joint work space through which to encourage patronage. A collaborative structure that responds to 2 needs: Optimization of resources and cooperation and is led by the true protagonists of research: people With rare diseases and people who with suspected of having an infrequent disease, still continue without diagnosis ".

This photograph made by the Director of FEDER and its Foundation was completed by the director of ISCIII, Jesús Fernández Crespo, who transferred to the families their commitment and that of the institution they represent.

During his speech, he pointed out the importance of a research model in the form of a stable cooperative network that would allow the development of an ambitious strategic agenda for the ER approach, which includes the generation of relevant scientific knowledge, innovation in technologies and therapies as well as in new ones Organizational models, internationalization and interaction with other thematic areas and health research initiatives.

During the ceremony also took place the delivery of the FEDER 2017 Awards, which recognize people and entities who work tirelessly to improve the quality of life of families.

The Prize to the Ambassador of Diseases Rarasfue to Celestino Olalla, President of Another World is Possible;

ElPremio to the journalistic work in Rarasfue Diseases for the Inocente Foundation and TVE for the development of the gala Innocent Innocent 2016 for children with infrequent diseases;

And the Corporate Social Responsibility Award was awarded by the Spanish Association of Orphan and Ophthalmic Drug Laboratories (AELMHU).

The Lifetime Award for Rare Diseases was for the researcher Ignacio Abaitua, who carries his entire professional career linked to rare diseases;

The Prize for the best training project in Rare Diseases was awarded to the Faculty of Psychology of the University of Seville;

While the Prize for the promotion and defense of rights was for the Council of Family and Equal Opportunities of the Region of Murcia and the Ministry of Social Policies and Family of the Community of Madrid for the development of the Guidelines for the Assessment of Disability In Rare Diseases.

The Inclusion in Rare Diseases Award for INeDITHOS Association;

The Autonomous Prize for the best initiative in favor of improving the quality of life of families was handed over to the Molina de Segura City Council, which has been a pioneer in giving visibility and support to the collective in the Region of Murcia;

And the Prize for the best project to promote research through the Work in REDse granted to the Alliance in Traslational Research in Rare Diseases of the Valencian Community.

Source: D´Genes

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