"The strange thing is that you are not with us" Empowering patients with strange diseases by means of diffusion and human rights
Organizing an anual events where pacients and family members, directors of asociations, groups of patients come together to share their experiences and train themseleves in huan tights, institutional strengthening, and become familiar with the medical and scientific advances, in order to obtain visibility in front of different publics as well as defending their right to health of their members.
About You
Section 1: You
First Name
Margarita de Fatima
Last Name
Gonzalez Barroso
Organization
Niños de Hierro A.C.
Country
Mexico, JAL
Section 2: Your Organization
Organization Name
Niños de Hierro A.C
Organization Website
Organization Phone
00 52 1 33 15966491
Organization Address
San Miguel 478 Colonia Jardines de Chapalita, Guadalajara Jalisco México C.P 45030
Is your organization a
Non‐profit/NGO/citizen sector organization
Organization Country
Mexico, JAL
Your idea
Name Your Project
"The strange thing is that you are not with us" Empowering patients with strange diseases by means of diffusion and human rights
Country and state your work focuses on
Mexico, JAL
Describe Your Idea
Organizing an anual events where pacients and family members, directors of asociations, groups of patients come together to share their experiences and train themseleves in huan tights, institutional strengthening, and become familiar with the medical and scientific advances, in order to obtain visibility in front of different publics as well as defending their right to health of their members.
Website URL
Innovation
What makes your idea unique?
There are approximately 7 thousand strange diseases that affect 10% of the world population. A patient with a strange disease, goes through life from doctor to doctor with no adequate diagnosis. If he gets the right diagnosis, he does not have access to the right treatment. In turn, if they manage to get the right treatments into the country, the governments do not want to pay for them because they are too expensive. There are isolated efforts that are diluted because there is no federation that groups all those that suffer diseases world wide together. In Europe there is EURODIS , in Latin America Fundación Geiser, in Spain FEDER but few under developed countries belong to these networks.
Our objetive is to spread the information information that helps save the life of the paatients for those that a treatment does exist and to make the decision makers aware in the health areas in order for them to investigate and develop medicines for those diseases that still have none.
Do you have a patent for this idea?
Impact
This Entry is about (Issues)
What impact have you had?
This year we have managed to organize the I er congreso Internacional de MPS y enfermedades hematológicas raras, with the support of medical laboratories, State Human Rights Commissions, Community Foundations, Patient Associations and the Ejecutive and Legislative Powers in Mexico which aim at spreading the importante of strange diseases in Mexico and Panama. Colombia, Brasil and Chile -aim to create a Mexican Network of Associations and Groups of Patients that deal Strange Diseases. The OMER Organización Mexicana de Enfermedades Raras. This will take place in Guadalajara, Jalisco México from November 4 to 6, 2010.
Problem
Lack of understanding of strange diseases.
Makes the patient like the process anguished and isolated given that he/she does not have any diagnosis. Delays the right treatment and diminushes the hope and quality of life of the patient. Not all the diseases have developed orphan medications. Puts obstacles in the right to life and health to those that are suffering the disease.
Actions
1. Get together the patient associations that deal with lisosomales and hematological diseases that are rare in Latin America by means of a congress. Which are the leading diseases in the areas of research and treatment in our country.
2. Get together associations and groups of patients in Mexico that attend these and other diseases to unite to the network.
3. Make annual conferences where associations and groups of patients from around the world are brought together at least once a year, bringing together the efforts of the foundations: Geiser, ENERCA , EURODIS and FEDER.
Results
One world wide networks of patients.
Empowered and informed patients able to take better decisions and to execute their rights.
Doctors who are better informed and who can make in time diagnostics.
Governments with laws that guarantee access to last generation universal medication and treatments.
Governments and laboratories united for the research and investigation.
What will it take for your project to be successful over the next three years? Please address each year separately, if possible.
Año 1: Creation of a Organización Méxicana de Enfermedades Raras, La aprobación de la Ley de Enfermedades Raras y Medicamentos huérfanos en México. Inclusion of all the rare diseases in the Fondo de Gastos Médicos Catastróficos de la Secretaría de Salud en México. Evaluation and Planning of the 2 congress on Rare Diseases in 2011.
Year 2 Human Resources, financial materials to continue with the work, administration of the OMER. Creation and signing of the contracts with Geiser, ENERCA, EURODIS Y FEDER, ICORD to work together. Spread to Africa the issue of rare diseases.
Congress with all the established networks of rare diseases.
Year 3: Incorporation of Africa in the world movement of Rare Diseases, Difusion in Asia, Second International Congress of Rare Dieases.
What would prevent your project from being a success?
The lack of financial resources given the lack of knowledge on the subject that affects 10% of the world population.
The possibility that the established networks do not unify in a world movement.
The resistance of the governments given that the diseases imply a high cost.
The lack of philanthropic culture in favor of vulnerable populations and minorities in certain countries.
How many people will your project serve annually?
Fewer than 100
What is the average monthly household income in your target community, in US Dollars?
Less than $50
Does your project seek to have an impact on public policy?
Yes
Sustainability
What stage is your project in?
Idea phase
In what country?
Mexico, JAL
Is your initiative connected to an established organization?
Yes
If yes, provide organization name.
Niños de Hierro A.C
How long has this organization been operating?
Less than a year
Does your organization have a Board of Directors or an Advisory Board?
Yes
Does your organization have any non-monetary partnerships with NGOs?
Does your organization have any non-monetary partnerships with businesses?
Does your organization have any non-monetary partnerships with government?
Please tell us more about how these partnerships are critical to the success of your innovation.
Without the junction of these organizations, the objectives will not be attained. We are members of the Alianza Latina Hematológica and this year we have got together with the Latin American associations dealing with the issue of Mucopolisacaridosis. Pharmaceutical companies work together with our project. Other firms such as Jabil collaborate with blood donation programs. With the goverment we work towards the access of universal health, the creation of a law of rare diseases and medication for these diseases in Mexico
What are the three most important actions needed to grow your initiative or organization?
1. Difusion of the issue of hematological diseases.
2. Fundraising to gurantee the sustentability of the institution and its projects.
3. Putting together of a productive project that allows us to offer employments to the parents of our beneficiaries, as a source of permanent income that depend exclusively on our performance.
The Story
What was the defining moment that led you to this innovation?
The project is born when a diagnosis is made in terms of interviews with parents of the patients that are supported by the association and by talking to the leaders of other groups of patients in Latin America where we identify the common problems:
1. The doctors in general have no knowledge on the rare diseases.
2. The patients take time in having an adequate diagnosis, between 2 and 8 years, avoiding them from having the right treatment that will allow them to have a better quality of life.
3. The available treatments are extremely expensive and the goverments do not want to take care of the integral attention or the medicines.
4. The right to health and life is not respected by the governments that do noty guarantee their universal access.
5. In the developed countries the life expectancy is 4 times bigger than in Latin America for the same disease.
6. There is no updated, trustable, information.
7. One asociation on its own is not taken seriously, however, all the asociations together could represent 10% of the world population.
Tell us about the social innovator behind this idea.
The innovation was an idea developed by Margarita de Fatima González Barroso and the Doctor Jesus Navarro.
Margarita was born in Guadalajara Jalisco, Julio 21, 1967.
She studied Business Administration at theUniversidad Autónoma de Guadalajara where she graduated in 1989 with honors. She dedicated herself to the development of the profession, and specialized in market research.
In 2002 she become mother of a child that when he was 45 days old he was diagnosed with Aplasic Anemia, and that is when the transfusions started in order for him to survive. The doctors were not very positive, given that were not very familiar with the disease. He was not diagnosed until the 8th month. He was diagnosed us BlackfandDiamond syndrome, a rare disease, with nearly no experience in Mexico. Since then, ithey decide to study the disease through the Daniela MariaArturi Foundation in USA, which facilitated information and names of medicines of the disease. They make the necessary actions in order to get the medicines donated, given that due to the costs they could not afford them. After this, they did the necessary work in order for the government to take care of the treatment and the medicines. She gets to know in the hospital parents of other children and helps them to respect their rights and have the adequate attention and treatment. In 2009 she decided to found Niños de Hierro A,C to offer hope and quality of life to people who are diagnosed with cronic anemia.
That same year she meets at the Centro Médico de Occidente Jimena, daughter of Dr. Jesus Navarro president of JAJAX MPS, who has worked in the country for 4 years, helping patients with mucopolisacaridosis, and together they decide to unite and get together with other associations to strengthen the movement against rare diseases.
How did you first hear about Changemakers?
Email from Changemakers
If through another, please provide the name of the organization or company
Dra. Virginia Escobedo
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