The FEDERG project, our motivations and aims

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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. A launch meeting was held on the 26th May 2012 in Paris during the 49th ERA-EDTA Congress. The official inaugural meeting of FEDERG is targeted early 2013.

Renal genetic diseases (RGD)

Although most of them are considered as rare diseases, Renal Genetic Diseases (RGD) collectively account for about 10 % of patients reaching ESRD in Europe. Besides autosomal-dominant polycystic kidney disease (ADPKD), which, with a prevalence of 1:1000 is by far the most frequent, there are approximately 40 rare and up to 200 extremely rare RGD, affecting all structures of the nephron.

In addition to the clinical consequences of the kidney disease itself, RGD may impact the quality of life and relationships of a whole family including reproductive/family planning matters. The economic burden of RGD is huge, since dialysis treatments of affected patients account for 0.2 % of national healthcare budgets and most orphan drugs are very expensive.

Fortunately, significant progresses have been made over the last few years, both in the diagnosis and the treatment of some of them, such as cystinosis, Alport syndrome, tuberous sclerosis and atypical hemolytic-uremic syndrome.

In this fast moving field of knowledge and clinical achievements, patients associations have and will increasingly have an important role in informing and helping patients, promoting the improvement of life of affected patients, supporting clinical research, and advocating particularly for rare diseases.

The solidarity value of umbrella organization’s: lessons from AIRG

AIRG-France, who initiated FEDERG, is a national federation of patients and families affected by RGD created 24 years ago in France, under the leadership of Pr. Jean-Pierre Grünfeld. Its success has led to the birth of sister AIRGs in Belgium, Spain and Switzerland, and more recently in Morocco and Tunisia.

« Solidarity » is a key value for rare/orphan diseases. As patients affected by rare disease or as association of patients, we turn to society for more solidarity towards the ones suffering from these orphan diseases. And, we can genuinely help each other, making solidarity within our groups of patients a reality. In RGD you have rare, less rare and extremely rare diseases. Each member of AIRG fights not only for his disease but for all diseases.

Thus in an effort to give a voice to the patients with rare and very rare RGD and counting on the solidarity of patients with a not so rare RGD (eg ADPKD and Alport), the AIRG approach has been to gather the whole family of patients with all kinds of RGD.

Moreover, a collaborative approach is highly desirable, especially for very rare diseases to reach a critical mass for research, clinical trials and advocacy purposes.

MOTIVATIONS: turning success of national umbrella organizations into Europe

The FEDERG’s initiative stems from the successes of the existing national umbrella organizations on RGD as well as of the analysis of their limits in a national context alone. The FEDERG’s basic goal is to build at European level, the same umbrella’s approach on RGD, with the same 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.

When looking into more details, the motivations for FEDERG are multifold:

  • · A better recognition and an increased weight compared to that of an association alone (research, public health decision, drugs, clinical trials, ..)
  • · An easier collaboration with nephrologists and other medical professionals
  • · A better chance to apply for European funding (They are more and more allocated to organizations and projects that cover several pathologies)
  • · High solidarity between associations and between countries.
  • · Effective cost sharing
  • · An increased ability to mobilize patients all over Europe.

In this endeavor, there are specific areas on which FEDERG wants to make a difference.

Driving the research agenda

By reaching a large number of associations, patients and families, FEDERG wants to be able to accelerate research on RGD, 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, and emerge as a strong European partner when international collaboration is desirable.

A patient’s voice and a legitimate stakeholder of European public health decision

Decision about marketing and reimbursement of medical treatments are taken by European and national authorities. FEDERG wants to be recognized as a legitimate representative of patients when it comes to RGD.

Patients affected by RGD must fight not only to get a correct diagnosis and then a treatment when they exist, but also for getting a quality of life as similar as possible to that of anyone else. Life is impacted in many aspects: side effects of treatment, chronic fatigue, quasi impossibility to have a normal social life, difficulties at work, difficulties to get a mortgage, educational hurdles for youngsters. All this are at the periphery of the medical domain, but here again public decisions at European level might make a difference on patient’s life. We want to voice the patients also for quality of life.

Expressing a strong sense of solidarity

Solidarity should be the motto of FEDERG: Solidarity of patients towards each other, solidarity between associations and patient groups, and solidarity between countries. These are the conditions of construction of a genuine European federation. 3

The FEDERG PROJECT (as of 8th June 2012)

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

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.

Our specific aims are to:

  • · Be the voice of national patient groups (whether formally constituted or unincorporated associations of patients) at the highest institutional level of EU policy making and public health
  • · Lobby to remove inequalities of care and discrimination across the EU
  • · Enable and empower national patient groups to better support patients and families in their own countries
  • · Help researchers in their work to identify and study disease causes, therapies and improved treatments

The means of achieving these aims are to:

  • · Raise awareness of the impact of renal genetic diseases within the European institutions and represent patients in public health negotiation, in policy setting (insurability, financial coverage of medical treatments, associated social services, ethic issues) and at the European Medicines Agency (EMEA)
  • · Promote, support and stimulate the sharing of knowledge and understanding of renal genetic diseases, nationally and across the EU
  • · Foster the formation and development of national patient groups or associations, where patients are not or less organized
  • · Support existing patient groups and associations by sharing information and best practice
  • · Provide information to help national groups to communicate with or lobby their national health organisations to promote the interests of their patients and encourage an integrated approach to their health and social care
  • · Provide information that will benefit patients who do not have a condition/disease-specific support group and those in hard-to-reach geographical/ethnic communities, including signposting them to reliable, quality patient information
  • · Promote collaboration between members, European institutions, European societies of professionals, international organizations
  • · Champion and drive an EU-wide research agenda
  • · Promote and/or participate in national and transnational laboratory, transitional and clinical research into renal genetic diseases
  • · Invite and encourage patient involvement in research and clinical trials
  • · Organise conferences, symposia, workshop and similar, and support the publication and/or dissemination of information and best practice
  • · Co-operate with other alliances, voluntary organisations and statutory bodies to further the interests of people with renal genetic diseases

The Framework for FEDERG

FEDERG is a non-governmental non-for-profit European federation of associations of patients that needs to be open to all patient groups and associations as long as they are concerned with one or more renal genetic diseases.

The federation should be open also to non European organizations, either associations from outside the EURO 27 or international organizations.

At the same time FEDERG should be well legally framed for being a legitimate official partner on patient side in Europe.

FEDERG membership

The status of the membership of the proposed federation will specifically reflect the various membership situations:· Full members are European or national legalized organizations established in any European country and dedicated to RGD.

They are the ones who are entitled to participate to the vote at the General Assembly of the federation for election of the governing board and for specific European matters.

Associate members are very legitimate patient groups of RGD but of non European status.

Affiliated members are individuals or informal groups from any European country. This category is particularly important to represent countries where the associations are less developed than elsewhere. One of the goals of the Federation is then to help creating local legalized patient groups around these individuals.

Honorary members are members that have highly contributed to the development of scientific knowledge on RGD and/or highly contributed to the emergence of FEDERG.

Sponsorship members are members contributing financially or logistically to the federation.

Our objectives for Year 0:

  • · Communicate the existence of FEDERG to known national patient groups and enlist their support in dissemination to attract more groups to join
  • · Develop FEDERG (Status and legal registration) and elaborate a strategy
  • · Encourage supportive clinicians and researchers to communicate the existence of FEDERG to their colleagues, patients and national/international professional associations
  • · Communicate the existence of FEDERG to known organisations focused on genetic, rare and nephrology conditions

Our (tentative) objectives for Year 1:

  • · Establish an English language website explaining the purpose of FEDERG and inviting visitors to sign up for news – translated pages to be made available via Google or with support from existing national groups.
  • · List all renal genetic diseases on the site with links to known national patient support groups or associations, and links to relevant scientific papers on PubMed (for example)
  • · Produce a simple flyer for the site and available for download; encourage local groups to translate this for their own use.
  • · Elaborate with partners (Public and private) a strategy for disseminating up-to-date information on renal genetic diseases in several languages.
  • · Establish a Scientific Advisory Committee and meet to discuss how we can drive the research agenda within the EU.
  • · Participate in or attend relevant scientific and professional meetings/conferences where possible.
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