About Us Our Work and figures REDMO Contact
Transcript of About Us Our Work and figures REDMO Contact
About Us
Contact
The Foundation: Facts and figures
REDMO
Scientific Research
Social Services
Our Work
FutureWe focus our efforts around the financing of scientific researchprojects to improve the future for our patients.
Trajectory We have amassed more than 20 years experience and have developed an international vision with offices in Spain, the U.S., Germany and Switzerland.
Independence Our financial independence is largely thanks to the contributions of individual members, one off donations, corporate donations and legacies. We are especially thankful toour president José Carreras for his fundraising concerts and recitals.
CommitmentA commitment to the patient is one of our principal objectives. We offer support to hospitals, free medical consultations, and anetwork of flats to improve the quality of life of those patients.
A private Foundation with a clear objective: “To work towards a day when leukaemia will be a curable disease for all and in every case.”
About Us
To inform society and raise awareness of the degree to which leukaemia affects the public.
To improve the quality of life for leukaemia sufferers and their families.
To increase the number of voluntary bone marrow and umbilical cord blood donors and the number of members of the Foundation.
To promote scientific research projects.
Strategic Objectives
José Carreras International Foundation works in 4 main areas:
The support of scientific research by awarding national and international fellowships to young doctors.
The search for bone marrow, peripheral blood and umbilical cord blood donors for patients who do not have a compatible family member.
The provision of a welfare infrastructure.
The provision of social services for patients with scarce resources, such as the Foundation's flats.
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Our work
The Foundation has an annual budget of 3,000,000 €and collects more than 1.000.000 € thanks to the benefit productions of José Carreras. This revenue serves to increase the resources which guarantee the viability of the institution in the long term.
In total, 41% of our revenue comes from the fundraising activities of José Carreras, 38% from the donations of members and businesses, and a further 21% from the performance of capital contributions.
The Foundation also administers a sum of 8,000,000 € corresponding to search for and transplants of bone marrow. The Foundation acts as an intermediary between the various international registers and the National Health System.
The Foundation: Facts and figures
Fellowships, support to hospitals and Foundation flats 24%Register of Bone marrow donors 47%Publicity 15%Administration 10%
The annual reports and accounts are audited by KPMG PeatMarwick.
Distribution of the Resources
25%
49%
16%
10%
Fellowships, support tohospitals and FoundationflatsRegister of Bone marrowdonors
Publicity
Administration
Members and friends of the Foundation
Scientific research and help to hospitals
Donations and transplants
Social services and information
-More than 7.5 million Euros is dedicated to scientific research.
-More than 150 projects are financed.
- 17 fellowships are offered to Spanish researchers, 23 to international scientists and a further 10 are offered within Europe.
- 6 Foundation flats.
-More than 120 families have benefitted from the use of our flats.
-More than 1,000 medical consultations are received each year.
-More than 125,000 visitors to our website (www.fcarreras.org)
during 2009.
-More than 21,000 members.
-More than 7,000 financial donors.
-Access to more than 14 million bone marrow donors and more than 400,000 umbilical cord blood units available around the world.
-More than 80,000 voluntary bone marrow donors in Spain.
-More than 40,000 available umbilical cord blood units in Spain.
The Foundation: Facts and figures
- 21,222 members (March 2010).
The Foundation: Facts and figures
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Growth of Membership
REDMO, has been the programme responsible for coordinating the promotion and search for voluntary donors since 1991. The programme supports patients who do not have a compatible family member. Only 1 in 4 patients are compatible with a member of their family and the rest rely on a voluntary donor or the transplant of their own bone marrow.
REDMO has access to the 14 million available bone marrow donors around the world and to more than 400,000 umbilical cord blood units (40,000 from Spanish mothers) stored in cord banks. Spain has the 3rd highest store of umbilical cord blood in the world.
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Growth of the number of Spanish bone marrow donors
The growth of the number of the searches done for Spanish patients since 1991
- 687 searches were initiated by REDMO during 2009.
-450 patients benefitted from a search by REDMO to find a compatible donor (donor or unit of umbilical cord blood) during 2009.
- More than 2,000 bone marrow transplantshave been carried out between patients and unrelated donors since 1991
Graph: Annual REDMO report 2009
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The transplant of bone marrow and umbilical cord blood in the case of pediatric patients has been isolated as one of the best hopes to cure Leukaemia in children. With this in mind the Foundation has kindly contributed to the development of appropriate installations for this therapy and for research in welfare centres. The financing of the Umbilical Cord Bank in Barcelona and the collaboration in the establishment of the CordBank in Düsseldorf (Germany) is an example of this commitment.
The Foundation has invested more than 7,5 million Euros in support of scientific research and has financed more than 150 research projects. In total, 25% of the annual budget is dedicated to this field.
The Foundation has also maintained its commitment to a diverse range of research facilities to enable them to sustain their structures. Annual grants are given to the Hospital Clínic i Provincial, to the Hospital Germans Trias i Pujol, and to the Hospital Duran i Reynals in Barcelona, and also to the Fred Hutchinson Cancer Research Center in Seattle (USA).
In addition, joint German and Spanish research ventures have been financed as part of the Pethema programme. Through this programme over 40 Spanish research centres collaborate with their German counterparts towards the goal of improving treatment protocols.
With the intention of finding a cure for Leukaemia and improvingthe treatment and quality of life for the patients, the Foundation grants national and international fellowships.
Scientific Research
Scientific Advancements
1976 A LONG ROAD, A BIG STEP
A Catalan medical team carried out the first bone marrow transplant procedure in Spain between a Leukaemia sufferer and a family member.
1988 ONE LIFE, LOTS OF LIVES
After recovering from his own illness José Carreras decided to contribute to the fight to make Leukaemia curable in all cases. A feeling of gratitude towards all those who had supported him, led him to create the José Carreras Leukaemia Foundation, with the aim of helping all patients affected by this disease.
1991 ONE PATIENT, LOTS OF DONORS
The José Carreras Foundation created the REDMO (Register of Bone Marrow Donors) to find a donor for patients who do not have a compatible family member, therefore facilitating the possibility of a hematopoietic transplant. Nowadays the REDMO is the official body charged with the promotion of and search for unrelated bone marrow and umbilical cord blood donors. The REDMO is connected with an international network of more than 12 million donors, 72,000 of whom are Spanish.
2005 MILESTONES REACHED, NEW CHALLENGES
This year saw the 1,000th transplant carried out from an unrelated donor. The José Carreras Foundation found the donors and made the hemapoietic transplants possible (bone marrow and umbilical cord blood) for 1,000 Spanish patients.
2009 NEW TECHNIQUES, BETTER FUTURE
The treatments for malign hematological diseases that have been carried out over the years have changed and developed to continue improving the quality of life of the patients and find a definitive cure for Leukaemia.
At the José Carreras Foundation we believe that there is only one answer: to strengthen our efforts in scientific research.
José Carreras Research Institute
The project of the José Carreras International Institute of Research against Leukaemia is born out of a dedication to intricately study the development mechanisms of Leukaemia and other hematological cancers, and with the aim of generating valuable diagnosis and treatment processes. These mechanisms should lead more accurately to the solution or prevention of the damage caused in the growth and proliferation of malign cells by means of identifying new therapeutic targets and applying new treatments.
This project, which is the first centre in Spain and one of onlya few in the world, focuses exclusively on the promotion of hematogical malignancy research.
The project of the José Carreras Institute is based in two coordinating campuses; The clinic campus, located in the branches of the Hospital Clínic in Barcelona; in the faculty of medicine of the UB and the research institutes IDIBAPS and CIBEK; and the Germans Trias i Pujol campus, located in the area around the Hospital Universitario Germans Trias i Pujol in Badalona, in the faculty of medicine of the Autonomous University of Barcelona and the institutes FIICSGTIP and IMPPCC.
To establish the Germans Trias i Pujol campus, the government ofBadalona, has ceded some adjacent land to the Hospital in which the International José Carreras Foundation will build a new building, around 4,000 m2, that will provide both research campuses with the necessary equipment. This contribution is valued at 9,000,000€.
To reach the forecast of the deployment of 8 to 10 research teams, the Institute will count on 100 collaborators, including investigators and auxiliary staff. The Institute will establish collaboration agreements with other research centres, both national and international.
The Foundation provides 6 flats appropriate to the needs of the patients and their families.
In 2009, the Foundation’s apartments hosted 23 patients accompanied by members of their families who had come from various different autonomous communities in Spain. Since 1994, more than 120 families have benefited from this service, with patients coming from all over Spain, as well as from Romania, Morocco, Andorra, Mexico, Argentina, Paraguay, Peru and Russia.
Since 1994, this service has benefited more than 100 families from all over Spain (Mallorca, Burgo, Vigo, Albacete, Zaragoza, Pontevedra, Girona, León, Santa Cruz de Tenerife, Lleida, Málaga, Tarragona, Las Palmas de Gran Canaria, Pamplona, Jaén, Murcia, Cádiz, Badajoz, Castellón, and Teruel) and Romania, Morocco, Andorra, Argentina, Paraguay, and Russia.
The Foundation also provides the patients and their families with a telephone, fax and an email with information about the disease and offers the free advice of noted specialists in the field of hematological diseases. During 2009, more than 1000 consultations were received.
Social Services
SPAIN
Raising Awareness
The Foundation campaigns are a perfect occasion to harness people’s feelings towards the fight against leukaemia. They also present a suitable opportunity to inform society about out support. We seek to promote active participation and to develop a social charity movement.
A disease such as leukaemia affects people of all ages and from very different backgrounds. For all of them, the immediate goal is torecover, but they all have a plan for the future that gives them the strength to fight against the illness. No matter how big or small those plans may be, the José Carreras Foundation wants to know about them! We asked everyone who was fighting against leukaemia at the time to share their plans for the future with us and let society know about them.
Communication
The Foundation sends out a bulletin (in Spanish and Catalan) three times a year to its members and financial supporters with the latest information about the fight against leukaemia. You can see the latest bulletins in the “Publications” section of the Foundation’s website: www.fcarreras.org.
The Foundation’s website also contains information about the disease, the donation of hematopoietic stem cells, and ways of helping, forums, etc. In 2009, the site received over 125,000 visits.
The José Carreras Foundation made an effort to develop new communication channels using the Internet.
We have established a Facebook group, with more than 6,000 members, a corporate blog with over 100 articles and a blog named “Tell us your plan” which has published the aspirations of more than 50 current and former patients.
We also have a news feed on Twitter and a video channel in Youtube.
www.cuentanostuplancontralaleucemia.blogspot.com
www.fundaciojosepcarreras.blogspot.com
Alexandra Carpentier de ChangyCommunication Dpt.
C/Muntaner, 383 2º2ª08021 Barcelona (SPAIN)
Tel. (0034) 900 32 33 34Fax. (0034) 93 201 05 88
See the blogs of the Foundation at:
http://fundacionjosepcarreras.blogspot.com/
http://cuentanostuplancontralaleucemia.blogspot.com/
And visit us on and