Fundación Natalí Dafne Flexer
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Mission Statement
Natalí Dafne Flexer Foundation ( FNDF ) is a Civil Society Organization, located in Argentina whose aim is help kids and adolescents with cancer. With the conviction that the fight against Childhood Cancer can only success with an integral approach, it works in different levels. Working close with Hospitals and health Authorities, FNDF provides emotional support and several services for families of kids/adolescents undergoing cancer treatment, in order to prevent delays or abandonment of treatment. FNDF also Contributes to the development of the pediatric oncology in Argentina, always aligned with the Free Public Health Hospitals and authorities.. At Academic level, with an University, FNDF runs the first and only Virtual Pediatric psycho-oncologic Curse and offers an Anual pressential Meeting for proffessionals working with kids with cáncer. At national and Continental level, FNDF Leads the Networking and Advocacy activities and represnets the needs at International bodies.
About This Cause
CHARITY DESPCRIPTION Childhood Cancer in Argentina Argentina is a large country and has a strong Public Heath Policy. The National Childhood Cancer Registry shows that every year in Argentina 1200 new Childhood Cancer cases are detected and 86% of those cases are treated in Public Hospitals. Although all the Diagnostic studies, Treatment, Drugs, is covered by the Law in Argentina, there are barriers on timely and accurate diagnosis, Access to medicines and Emotional and Social Support. There are delays either under the National or Province Governments responsibility, or because of Private Security un-non-accomplishment. There are also Inequities in Access, depending on the location of the patient and the specific treatment center, which influences on survival rates. Story of the Foundation On 1995, soon after the death of her daughter Natalí, Edith started this Organization. Her experience as a mother, showed her the importance of access to information on the capacity to face the illness and treatment. During the first years, the focus was on providing informational materials for free for families of kids with cancer. The following years the work was directed to palliate the suffering not only of children with cancer, but also of those around them. It included: legal advice, medical insurance advice, emotional support, parental assistance, recreation activities, drugs bank, nutritional reinforcement grants, registry of blood and platelet donors, outdoor activity creative workshops for parents and children, provision of medical resources such as wheelchairs, corsets and prosthesis, family grants, transport and services counseling, school counseling, advice on community resources such as bus subsidiaries, clothing and food. FNFD work was first developed at a local level (the capital city of Buenos Aires and it’s outskirts). But, during the past ten years, has grown not only at a national and regional level (in Latin America) but also internationally. Aims Because most of the kids with cancerin Argentina are treated in Public Hospitals and because the best pediatric oncologists work there, FNDF focus its help on improving their capacity and providing resources to Public Hospitals. Because Childhood Cancer is a complex issue, and requires multiple source of resources, FNDF focus on establishing Networks and promoting capacity building among all the actors implied in the care of kids with cancer. Because Argentina is a large country and not a single Organization can reach everybody in need, FNDF helps develop new CCFs and also help them to improve their work and the services provided for KwC. Because Timely Access is important in this illness, FNDF focus its efforts in being close-to-families that need its services, provides a close follow-up attention to each family needs and legally defends the Rights of the Child when necessary. Booklets The first step was editing and providing for free booklets for different users around a kid with cancer: for Patients ( child and adolescents ), Parents, Siblings, Teachers and Schoolmates, Volunteers and Nurses. Also bringing information on various issues: ie, Hygiene, Nutrition, Catheters Care, Palliative Care,. Till then, 17 different titles were edited and more than 100.000 booklets were distributed for free in Argentina and other Spanish-speaking countries in Latin-america and Europe. All of them are available through the WebSite. Titles:……………………. Influence area FNDF has now 7 Chapters, all of them located inside or close to the most important Public Hospitals where Kids with Cancer receive treatment: In front of J.P Garrahan Hospital, in front and inside Gutierrez Hospital, inside the Elizalde Hospital, inside the Posadas Hospital in GBA, inside the Niño Jesús Hospital in Tucumán, and local people working close to Juan Pablo II Hospital in Corrientes Province and in Tierra del Fuego. Although the main Chapter is the one located in front of the Gutiérrez Hospital, all the other Chapters provide all the Servicies directed for the kids and their families. Each of them has a recreational area, psicological support and a Social service to ensure the timely access to treatment. Every month, more than 1200 families receive at least one direct service. Services to families are in place in order to provide families with tools that helps them to cope with the illness and the treatment, covering emotional and practical needs. Emotional Support Area. Because the impact of the diagnosis and the need to keep functioning as a family and take care of the other kids, along with providing support to the son/daughter with an illness that menace his/her life, requires to mother and father to learn new coping strategies. FNDF provides personalized psychological follow-up of families in risk, promote Peers advices, and offer regular assistance through the Parents Groups, for kids under treatment and Bereavement Parent Groups and Survivors Group. FNDF has a Recreational area that includes playing rooms at Hospitals wards, Recreational activities in each of the Chapters, Outdoors family activities, groupl Birthday Parties and special trips. With the Social Support area, FNDF tries to prevent the occurrence of delays of treatment and also reduce the stress of the family in the search of the required resources: ie, medicines, devices, prothesys, wheelchairs, catheters. Legal advice and legal actions are provided by FNDF staff to make a defense of rights and the coverage by the responsible like Governmental agencies and Private Insurance Companies. FNDF help Parents to understand the importance of Adherence to Treatment and empower Parents to demand for their own Rights. FNDF has developed a innovative technological tool dedicated to the follow-up of needs linked to the related resources available in the Community. It helps to identify Barriers, learn how to overcome them and improve the capacity of the Organization to bring the best possible assistance to the beneficiaries. It is appreciated as an innovative development and brings useful information to modify Health Policies Processes. Academic Area Being aware of the importance of the need of well trained professionals, FNDF runs a Virtual Course on Psicho-oncology with a Specialized University, ISALUD. Around 130 professionals from Argentina and 9 other countries in Latin-america took that training. Teachers of that Course are International experts. FNDF also receives students from other Universities from Argentina and Spain. Every year FNDF organizes a Meeting at the ISALUD University that joins people from various areas of Childhood Cancer health Care and support Services. Support to Treatment FNDF provides medical devices and medicines to Hospitals when needed, pay professionals staff and administration person at hospitals, pay the logistic and studies of Diagnostic Samples and has refurnished areas and built wards. Networking FNDF has developed the National Network of Childhood Cancer Organizations. For the last 13 years 25 CCFs ( Childhood cancer organizations ) meet anually, sharing best practices, resources, doing Awareness activities and representing Kids with Cancer’ needs at their Governmental Bodies and the National one. At the Latin-american level, FNDF has developed the Regional Network and has represented Latinamerica at the International Confederation for the last 14 years. FNDF President participated of the United Nations special Meetings and World Health Organization General Assembly. She is also working at International Working Group on Access to Medicines for Kids with Cancer in Developing Countries. She was invited as an Expert at other Meetings in Geneva with representatives of International Agencies. Staff and Volunteers This work is done by 13 payed staff, 150 volunteers, Ad-honorem work and Pro-Bono services. Resources Development FNDF has a strong value of a transparent and efficient management of the resources. In kind donations are received, most of them in Medicines and other things for use in our Chapters and to give out to Parents. FNDF has 5000 monthly donors and stablish alliances with corporates. The Money is managed under a very accurate technological tool and is under regular Supervision and yearly Audited. FNDF has created an Independent sustainability through a multiple source of Funds and the fidelity generated after years of work and has established strong partnerships. Projects FNDF is showing its main Project "A great House for a Great Cause" in the dedicated place of this Site.