FEDERG Partner Brief 1/15

Dear FEDERG members, dear friends,

Dear FEDERG members, dear friends,

I am very pleased to present you to the first FEDERG Brief. During last twelve months, members of the federation have been very active to build the house, sorting out administrative hurdles and this newsletter, together with the new website, is one achievement in that regard. This newsletter is meant to periodically inform you about FEDERG and on activities that are carrying out and planned by us.To introduce the first issue of the FEDERG newsletter, I would like to recall what Pr. Yves Pirson, a long standing promoter of the idea

and concept behind FEDERG, was saying in 2004: Why should we go for Europe? Because the construction of Europe of knowledge is on its way and we must be part of it.... Because most of renal genetic diseases are rare and one needs to regroup and break the barriers of isolation... Because we need to share and construct a social life that includes effective support to patient affected by rare and orphan diseases...

Because one needs to synergize the clinical research for renal genetic disease. We can measure the progress since 2004 at European level, in terms of recognition of rare diseases, financing Clinical research on renal diseases, and improving social support to patients. Today, the main reasons to go further for Europe remain the same. FEDERG as a federation of organizations of patients is now ready to play its role. Welcome to share with us this endeavour.

The idea behind FEDERG - interview with chair Daniel Renault.

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Interview: Incidental findings linked to NGS techniques during the 3rd annual EURenOmics project-meeting in Heidelberg.

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). NGS brought enormous improvements in terms of investigations for research or diagnosis on inherited diseases, rapidity and lowering of the costs.

This enormous new capacity to explore the whole exome (genes that are coding for proteins) or even larger the whole genome brings also the possibility to uncover a finding that was not sought for; this is what is called incidental findings: a mutation or a variant that may indicate a potential risk of the patient to develop a specific disease.

The BIG Questions: What to do with incidental findings? Do and how the geneticians/clinicians should or must feedback the patient with information on the findings?

Read more in the interview with DANIEL RENAULT, chair of FEDERG.

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The Role of the scientific committee

The Role of the scientific committee

It is critical for an organization of patients to rely on a thorough scientific expertise, and one brick of the FEDERG house in 2014 has been to establish a scientific committee. It is expected that the SC advise and stimulate FEDERG on key scientific issues and in representing Inherited Kidney Disorders European patients in the relevant institutions, help FEDERG in developing patient associations wherever needed

and help FEDERG in support of national associations for disseminating proper information to patients. The role of the SC is multifold:
• provide advice and recommendations to the governing body in matters of research support for projects, funded by FEDERG or simply-supported it; • promote communication between research groups and professionals of health across Europe and the rest of the world,

in order to ensure maximum visibility of research, avoid duplication and advance knowledge at the best pace possible; • be proactive in generating research proposals and soliciting funds for projects carried out by scientific groups including members of the Scientific Council. In such a case, special attention will be required to avoid any conflict of interest; • be heavily involved at European level in the Organization of conferences on renal diseases of genetic origin.

Our projects. Our work. FEDERG is an umbrella organization on renal genetic diseases in Europe

Our projects. Our work. FEDERG is an umbrella organization on renal genetic diseases in Europe

The FEDERG has been initiated in 2011 by a consortium of patient groups/associations and has been officially registered in April 2014 under the Belgium law. 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.
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.

A patient’s voice and a legitimate stakeholder of public health decision and for quality of life: 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.

As most of the RGD are considered as rare diseases, patients with RGD are commonly concerned affected by this aspect (rareness): we share the rarity of our conditions. As we share many aspects of our conditions, the sense of “Solidarity” is very strong among us. 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. In turn, our duty is to genuinely help each other, making solidarity within our groups of patients a reality. In RGD you have rare, less rare and extremely rare diseases. The spirit, on which such an umbrella organization as FEDERG is built, makes each member fighting not only for his disease but for all diseases.

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Event: 2nd FEDERG members meeting: BRUSSELS Saturday 5th September 2015

At the occasion of the ESPN 48th Annual Scientific Meeting of the European Society of Pediatric Nephrology (http://www.espn-2015.org). Venue: SQUARE - BRUSSELS MEETING CENTRE
, Glass Entrance,
 rue Mont des Arts, 
B-1000 Brussels. This meeting is hosted in the premises where ESPN is having a congress on the 3-5 September. The meeting will be for FEDERG members, an opportunity to interact face to face with each other, to share our first year of experiences as federation, as well to discuss and plan future activities. Members will be able also to interact with the Nephrologists participating to the meeting, and to get in touch with the participants in the exhibition hall. FEDERG will have a booth during the 3 days of the meeting. Please do register in advance as we need to provide the organizers in advance with a list of name to let you in: send a mail to both Michel Schenkel and Daniel Renault (see mail below) indicating your willingness to attend the meeting on Saturday and also your availability for another day to be present at our boot. Contact: Michel Schenkel (Secretary) at michel.schenkel@skynet.be, Daniel Renault (Chair) at daniel.renault34@orange.fr

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Event: Invitation European Symposion on Eye Problems in Cystinosis, October 8 - 10, 2015

Cystinose-Selbsthilfe e.V. and Cystinosis foundation Germany (a new founded foundation to support our patient organization and the cystinosis medical center Traunstein) invite you for a symposion on eye problems in cystinosis patients taking place October 08 - 10, 2015 in Salzburg / Austria. There will be international specialists meeting to see a lot of patients and discuss several problems treating eye problems in cystinosis. Nephrologists and eye specialists from many countries will be there to follow this and learn from each other. The goal is to find guidelines for treatment that will be used worldwide, so all patients have the chance to be treated as it is best for them from day 1.

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