GENEFA members are people directly affected by FA (patients, relatives and friends) whose periodic contribution helps to provide the required funds for this research project in order to reach the FA cure.
Obviously, our platform members themselves must be first in making the maximum effort to their goal, but still, because of dealing with a rare disease, these fees will not fully fund the research project. Hence we also need the support and cooperation of all people, entities (associations, federations, foundations ...) and companies that can provide a little help to achieve our goal that is no other than healing FA and moving forward in gene therapy research, a technique now foreseen as the most suitable for the cure of genetic diseases in general.
Absolutely all proceeds collected through GENEFA are to be used entirely to fund gene therapy research for a FA cure. All efforts that involve carrying out this initiative are conducted by our platform in a voluntary and unpaid manner. (See: Project )
If you want to take part in GENEFA, join us.
If you want to help us, collaborate.
Due to the singularity of our objective, that is research in gene therapy for FA cure, and the need to unite all efforts at national and international stages, this platform is not born as an association, federation or foundation, given that these entities have a much broader purpose of support and care for those affected and their families in every way. In fact, most people adhered to this initiative, take part in any of those above mentioned entities and will continue working for them to help improving the quality of life of those affected and the people around them, in all areas.