Patients also do research
Sarcoma is an uncommon type of cancer with little research, patients suffering from sarcoma in Spain have decided to activate and promote a Research grant on Sarcomas, jointly with GEIS a Cooperative Group of sarcoma specialized oncologists.
About You
Section 1: You
First Name
Asociación Española de Afectados por Sarcomas
Last Name
AEAS
Website URL
Organization
Asociación Española de Afectados por Sarcomas AEAS
Country
Spain, MD
Section 2: Your Organization
Organization Name
Asociación Española de Afectados por Sarcomas AEAS
Organization Website
Organization Phone
Organization Address
C/Ecija 99 CP Las Rozas de Madrid 28230 Madrid
Is your organization a
Non‐profit/NGO/citizen sector organization
Organization Country
Spain, MD
Your idea
Name Your Project
Patients also do research
Country and state your work focuses on
Spain
Describe Your Idea
Sarcoma is an uncommon type of cancer with little research, patients suffering from sarcoma in Spain have decided to activate and promote a Research grant on Sarcomas, jointly with GEIS a Cooperative Group of sarcoma specialized oncologists.
Website URL
Innovation
What makes your idea unique?
Patients can step the research forward and contribute to solving the System's deficiencies.
Do you have a patent for this idea?
No
Impact
This Entry is about (Issues)
What impact have you had?
Approximately 250 words left (2000 characters).
Problem
A sarcoma's main problem is that as it is an uncommon type of cancer, it does not receive the financial incentives it should receive so that private undertakings are able to invest in drug research, moreover the public sector does not hold a decisive participation in sarcoma research either.
Actions
In order to develop a research project it is essential to have the participation of field-specialist professionals, and we have clearly counted with the participation of the Spanish Sarcoma Research Group. So that they act as the tutors of the development of research and the awarding of AEAS' grant.
The next step is to spread the existence of this project within benefactors, patients and the society in general so they support and contribute with the minimum amount required to achieve the implementation of the research project.
After implementation and awarding of the grant, also within a scientific feasibility criteria and with a translational research framework, it is planned that patients and institutions who encouraged the grant obtain simple information evidencing the progress pursued.
Results
Approximately 150 words left (1200 characters).
What will it take for your project to be successful over the next three years? Please address each year separately, if possible.
Approximately 300 words left (2400 characters).
What would prevent your project from being a success?
The fact of not obtaining the minimum amount required to carry out the research project.
Not being able to transmit to patients the value of the research carried out, and that in some way this does not feed back the importance of a project like this, and that the perception of patients is that researchers are far from the human reality of the disease existing in their laboratories or clinics, though without validity of the studied issues in terms of practical application, in specific cases.
How many people will your project serve annually?
1001‐10,000
What is the average monthly household income in your target community, in US Dollars?
More than $4000
Does your project seek to have an impact on public policy?
Yes
Sustainability
What stage is your project in?
Idea phase
In what country?
Spain
Is your initiative connected to an established organization?
Yes
If yes, provide organization name.
Grupo Español de Investigación en Sarcomas GEIS
How long has this organization been operating?
More than 5 years
Does your organization have a Board of Directors or an Advisory Board?
Yes
Does your organization have any non-monetary partnerships with NGOs?
No
Does your organization have any non-monetary partnerships with businesses?
No
Does your organization have any non-monetary partnerships with government?
No
Please tell us more about how these partnerships are critical to the success of your innovation.
Without the participation of a cooperative group like GEIS we would not have a standardized research project and we would drop an important connection between the assistance or patient’s world and the Sarcomas researchers’ world.
What are the three most important actions needed to grow your initiative or organization?
-To be accepted among patients as a factor of change in terms of sarcoma research with the awareness that "we can".
Achieve a research approach avoiding it to remain in the ethereal, thus materializing in medical improvements and enable to handle specific cases which can almost be identified with names or surnames.
- Obtain sufficient funds.
The Story
What was the defining moment that led you to this innovation?
When we notice that there are fellows whose health condition deteriorate or who die without having at least a clear perspective that progress is being made in terms of sarcoma research.
When we realized that a research project like the Grants project developed by GEIS at present does not require exorbitant budgets to be developed.
When at AEAS board meeting we noticed that it was necessary to carry out specific projects and support the research.
Tell us about the social innovator behind this idea.
Come to an end with the existing sensation among patients, in particular among Spanish patients, that .......someone to help me will come out.... This is not the case, help is generated within ourselves, by contributing with other patients!or .... How defective is the public administration that does not help me nor listens to my suffering. NO.Help is generated within ourselves and the fact that you are listened to depends on how significant is your shared voice and on the fact that the message is properly channeled.
Ultimately to say no to victimization, no to resignation, to say yes to collaborative working looking to the future.
How did you first hear about Changemakers?
Through another organization or company
If through another, please provide the name of the organization or company
AMGEN
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 | 84 weeks agoAsociación Española de Afectados por Sarcomas AEAS submitted this idea. |
| 84 weeks agoPedro Chana said: La investigación tradicionalmente has estado en manos de los laboratorios farmacéuticos o las universidades, la participación de quienes ... about this Competition Entry. - read more > |
