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Treatment of genetic diseases: a social issue?

When armed conflicts, plagues, and cataclysms are making headlines, only few medias cares about the fate of millions of people in the world suffering of hereditary disabilities.

Even so, some countries do care about it.

The Institute of Genetic Diseases Imagine was inaugurated June 28 2014 in Paris, France.

It is Europe’s largest research center and has the duty to understand and to heal genetic illness. It already envy researchers in this domain all around the world.

Let’s mention some quotes of their website: “Innovation is a core value in the Institute Imagine.” “The goal is to transfer the knowledge of the research to the clinical and to design new solutions. The tight bond between the two allows to facilitate the emergence of new directions of research and so new cures. ” “This continuity of Research and Treatment is followed by an organization centered around the patient. The approach taken by the Institute Imagine is an approach “in loop”, who goes from the patient to the research and from research back to the patient, to accelerate research and to find a new treatment faster.”

So they make searches and offer the best treatments that do not exist elsewhere in the world. Especially biotherapies that consist of biomedicine with cell and gene therapy.

The first gene therapy trial is for patients with X-linked severe combined immunodeficiency (SCID-X1) and had been performed, four other protocols of cell therapy and four of gene therapy are currently running. Two test of cell therapy and two others for gene therapy are in preclinical development phase.

“The goal is the development of new clinical trials to treat serious hereditary diseases. The result will pave the way for new treatment for acquired diseases such as infectious diseases and cancers. ”

The institute is made up of 23 research laboratories and 450 workers who develop, independently, but synergistically, projects over many aspects of genetic diseases. The institute said they have benefited “mostly from public funding to build the building in partnership with the Public Assistance Hospitals of Paris, and to equip the laboratories and technological platforms. The annual budgets of the Institute is around 40 millions Euros, which 30 millions came from public funding for the operation of laboratories and research teams, 6.5 millions is received in the name of Investment Program for the future. 3.5 millions euro is therefore still to be funded through sponsorship and industrial collaborations each year. To go even further, Imagine need to gather the best of the public and the private. An institute of this size can never carry out its mission without the support of private , companies or individual.”

By creating the Institute of genetic illness Imagine, the global research on genetic diseases had made its first step in a new era.
Will we take it as an example here in Quebec and Canada?

There is excellent researchers and laboratories in Quebec. The first gene therapy approved for marketing, the Glybera,was designed by a Quebecer, Dr. Gaudet. Without adequate financial resources in Quebec, clinical research was funded by a European company, and this treatment has been approved for marketing in Europe.

The gene therapy allows to reduce considerably the high cost of the the management of patients with genetic diseases. Gene therapy is designed to cure a patient after a single treatment.

I invite you now to sign the petition asking the government of Quebec:

  • To make the development of therapy for genetic illness a priority in health.
  • To mandate the Research Fund of Quebec –Health and Genome Quebec to devote a larger proportion of their resources to the development of gene therapy program.
  • To develop adequate facilities for the production of virus vectors usable in clinic trials.
  • To promote the development of biotechnology companies focusing on genetic therapies.

Sign the petition here: https://www.assnat.qc.ca/fr/exprimez-votre-opinion/petition/Petition-4765/index.html

 

 

 

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