FEDERG.ORG | FEDERATION OF EUROPEAN PATIENT GROUPS AFFECTED BY RENAL RARE/GENETIC DISEASES

ABOUT FEDERG

FEDERG IS THE FEDERATION OF EUROPEAN ASSOCIATIONS OF PATIENTS AFFECTED BY RENAL RARE/GENETIC DISEASES.

WE ARE THE EUROPEAN VOICE.

The project FEDERG is an initiative led by a consortium of European patient groups/associations aiming at creating a Federation of European associations of patients affected by Renal Genetic diseases. FEDERG is an umbrella organization on renal genetic diseases in Europe. The FEDERG's basic goal is to build at European level, an umbrella organization on Renal Genetic Diseases (RGD),

with the objectives of being a voice of all patient concerns, facilitate the dissemination of knowledge, express solidarity among patients, ensure a fruitful relationship with professionals, weigh on the research agenda and on public health policy. In this endeavor, there are specific areas on which FEDERG wants to make a difference. By reaching a large number of associations, patient groups and families,

FEDERG wants to be able to accelerate research on RGD, to promote cohorts and registries, to mobilize more efficiently patients for clinical trials, to participate in the advisory boards of clinical trials, to raise funds for research, to help set the research agenda on RGD by contributing to develop international research strategies, and emerge as a strong European partner when international collaboration is desirable.

Together strong

FEDERG is a non-governmental non-for-profit European federation of associations, groups and other organizations, who support children and adults living with renal genetic diseases.

Share & solidarity

Solidarity is the motto of FEDERG: Solidarity of patients towards each other, solidarity between associations and patient groups, and solidarity between countries.

Governance

General Assembly meeting every year, Board meeting monthly, Bureau meeting whenever required, Scientific Council set to ensure a strong liaison with the professionals on scientific issues and to interact more efficiently on health policy and ethics.

Research Agenda

The scientific council advise and stimulate FEDERG on key scientific issues and in representing inherited kidney disorders european patients in the relevant institutions.

Projects

OUR WORK MEANS A STEP TOWARDS INTERNATION COOPERATION - WITH OTHER PATIENT GROUPS AND ALLIANCES.

EUREnOmics

EURenOmics is a European funded research project, focused on 5 groups of kidney diseases. FEDERG is participating to this project as member of the Ethical Committee.

ERN starting

FEDERG is fully committed in representing patients on the development of a Reference Network for Rare Renal Diseases (RDD). This page is dedicated to the information on this initiative.

RD-Connect

RD-Connect is a European funded project aiming at facilitating the emergence of integrated platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research.

Science & Research

PATIENTS RECRUITMENT for RESEARCH: Studies and Trials on Renal Genetic Diseases for which FEDERG support has been thought for mobilizing the patient community.

STORIES

SUCCESS STORIES FROM THE EUROPEAN PATIENT GROUPS WHICH ARE MEMBERS OF FEDERG.

Connecting RD-Researchers

The annual RD-Connect meeting, which took place in Palma de Mallorca in early March, updated project partners on over two years of progress in developing an integrated platform that combines clinical profiles with genomic data and biological sample availability to support rare disease research.

Incidental findings: NGS techniques

Recent years have seen the arrival of a new technique for genetic sequencing with an increased capacity to explore the whole genome of patients: it is the New Gene Sequencing technique (NGS). But what to do with incidental findings? This topic was the focus of the ethical session during the 3rd annual EURenOmics project.

Fighting rare diseases

2013, January: A multi-million Euro initiative is bringing together researchers from across the world to develop new diagnostic tools and new treatments for people with rare diseases and to connect research data on a global scale. Four IRDiRC projects have been launched which have received 40 million EUR of funding.

FEDERG: ONE EUROPEAN VOICE

FEDERG is launched on june, 7th, 2013: 12 associations of 7 European countries and 1 international federation, had decided to join forces to create a Federation of European Associations of Patients affected by Renal Genetic Diseases with the support of professionals organizations (ERA-EDTA, ESPN) and EURORDIS.

EVENTS

We are active - you can meet us on most of the major international events and conferences

See Where We Active

We are active in Europe, 8 countries : Belgium, UK, Germany, France, Spain, Netherlands, Switzerland, Bulgaria. And we are growing. The idea of FEDERG is a european network with patient groups who work together and share knowledge. Our overall aim is to improve the health and quality of life of all those affected by renal genetic diseases, through advocacy, representation, engagement and collaboration. We are many considering that together we are stronger for our capacity in dealing with the specificities of our own pathology, as well as on the health and social life aspects that are common to all renal genetic disorders (transmission, dialysis, transplant, sports education and working with a chronic disease, etc.). We strongly believed that a European federation for renal genetic diseases was critically needed.