Research and DEBRA
DEBRA International incorporates the different DEBRA charities from countries all over the world. The connection between each DEBRA means we can be in touch and up to date on international research worldwide. The initial reason for establishing the link between the DEBRA offices was primarily research.
We soon recognized that the importance of improving the quality of life of those families currently living with the disease is equally important to trying to find a cure for the future.
Finances and resources from DEBRA Spain are limited so we contribute as co- financiers on specific projects along with other charitable entities.
To learn more about our contribution to research from our President click here.
DEBRA International priorities:
Improve genetic and biological understanding encompassing all forms of Epidermolysis bullosa. Greater understanding will lead to the discovery of improved diagnosis and treatments.
Understand the nature of wound healing and the development of skin cancer in people with Epidermolysis bullosa and with this expand the research into the development of better treatments and prevention.
Work on the development of different therapies including possible genetic, cellular, medical and protein therapies.
Support research into medical care to improve treatment and symptom management.
Total spend on research by DEBRA Spain:
The amount spent on research depends on the total sum raised that year. The budget allocated to the different projects we are involved in is determined at the Annual General Meeting. Our forecast includes the amount needed to continue with our work for the next 10 months.
This allows us to continue to support families regardless of other financial commitments or unexpected loss of income.
If on the 31st of December DEBRA has raised more than is needed to cover the months ahead then this amount is invested into research.
To cover 25% of the cost for the clinical trial “A preliminary study into the safety and effectiveness of using mesenchymal stem cells extracted from bone marrow for the treatment of Dystrophic recessive Epidermolysis Bullosa. This study was initiated by the foundation for Biomedical Investigation at the University Hospital La Paz and led by Dr Raul de Lucas and Dr Maria Jose Escamez.
This year DEBRA Spain has also contributed to genetic testing and research for EB. This was used primarily to recruit a molecular geneticist at the Biomedical Research Centre for rare diseases with the following targets: · To speed up the process so that people with the condition and their families can be diagnosed quickly and accurately. To provide conclusive genetic assessments, essential for family planning and more specifically for prenatal studies and pre implantational screening. · To improve the accuracy and speed of current diagnosis techniques and with this avoid the need for skin biopsies. · To facilitate the involvement of people with Epidermolysis bullosa in clinical trials. Genetic testing is essential for this.
Thanks to a donation from the Global Gift Foundation a contribution was made to the study into rare diseases currently being conducted by Dr Marcela del Rio from the University Carlos III IN Madrid.
DEBRA Spain covered the cost for the second consecutive year for a molecular geneticist for the Biomedical research centre for rare disease (CIEMAT-CIBERER)