In this sense, both entities have committed to attend to the needs and doubts of those affected as well as their families and the society about gene therapy and its applications.
The agreement has been signed by the President of FEDER Basque Country, Juana María Sáenz, and the president of VIVEbiotech, Gurutz Linazasoro, and will allow to strengthen the attention that the affected people with a rare disease will receive. Thus, the psychological and therapeutic counselling offered by FEDER will be combined with the comprehensive and professional information on gene therapy offered by VIVEbiotech. The result will be the combined advice that will benefit the affected people.
Under this agreement, both entities have undertaken to carry out, together, various awareness and training actions related with rare diseases. In this sense, the agreement includes the organization of talks, conferences or meetings with the aim of promoting joint and reciprocal collaboration actions that will serve to spread the reality of people and families affected by a rare disease.
They will also work closely together to provide specific support and advice, and exchange the information needed to address issues affecting patients and their environment.
In the words of the president of VIVEbiotech, Gurutz Linazasoro, this agreement is “a giant step to fully serve people with a rare disease, and provide accurate information to their relatives in the field of gene therapy in which the VIVEbiotech members are experts in”. In addition, thanks to this agreement, “the doctors who treat these pathologies can consider the option of gene therapy because VIVEbiotech could make it possible”.
On the other hand, for the president of FEDER Euskadi, the signed agreement is “adding to the wide network of collaborators an entity that cares about the group of people suffering from a rare disease”. According to Juana María Sáenz, “the sensitivity around low prevalence pathologies and the commitment to research and development of orphan drugs have grown in an ostensible way, although the achievements do not surpass what remains to be done; we have a hard task ahead” she said.
40.000 Basque people suffer from a rare disease
Rare diseases have a genetic origin in a large percentage of cases, and affect more than 40,000 people in Euskadi and more than 3 million people in Spain, most of them children.
Last Tuesday, February 28, the Rare Diseases Day has been celebrated. This year the importance of research in the field of rare diseases will be highlighted, as it will not only help to improve the detection and treatment of these diseases, but will revert positively in the society as a whole.
About FEDER País Vasco
FEDER País Vasco is the delegation of the Basque Country of the Spanish Federation of Rare Diseases (FEDER). To date it has 14 associations based in the Autonomous Community of the Basque Country. Its main function is to provide support to the people affected by a rare disease, their families and their immediate relatives.
One of its main objectives is to increase awareness on these diseases, to provide the affected people with access to information on available resources, benefits and aids, and to advise them on issues related to rare diseases and the disabilities caused by them. In addition, it is in charge of promoting the social integration of the group, and demands that low prevalence diseases can be considered as a public health issue.
About VIVEbiotech
VIVEbiotech is the only company in Spain capable of producing viral vectors in GMP conditions to be applied in gene therapy clinical trials and thus contributing to the cure of diseases of genetic origin. Viral vectors are the “vehicles” that carry a modified gene inside the cells to replace it with the “damaged” gene that causes the rare disease.
VIVEbiotech is able to produce the viral vectors that are indispensable for the success of gene therapies in rare diseases and in other more common disorders such as Parkinson’s Disease and cancer, where they are being tested with promising results.