HEIDELBERG 12th January 2016 – First Meeting of the European Reference Network for Rare Renal Disease (EuRenNet)
Twenty participants in this first informal meeting of members of the future European reference network for rare kidney disease, from nine countries. The meeting was chaired by Pr. Franz Schaeffer Heidelberg, and was sponsored by the Working Group on Inherited Kidney Diseases of the ERA-EDTA, coordinated by Pr. Olivier Devuyst, Chairman of the FEDERG Scientific Council.

Patients are heavily involved in the preparatory work for future network. FEDERG and three representatives of national associations, federation members, were present at the meeting.

The objective of this meeting was to take stock of the application process, according to the latest instructions issued from the Commission, in particular the “Toolbox” put online on 23rd December 2015.

The meeting has highlighted the challenges that the teams will face for the national accreditation of their reference centers. Much work will have to be done by each center candidate to provide documentation for obtaining highest score on the evaluation criteria of reference centers (Health care providers), which are severe according to the professionals.

The project is then a bet on the future, since there are no European funds to support the network at this stage of the process and because those who have already done a great job for organizing their national reference networks are solicited more, with benefits in other countries.

Although this noble task of solidarity is perceived by everyone as heavy, the participants have formally pronounced for rapid work to enable the network to be ready when the call will be launched in a few weeks.

FEDERG presented the patient organizations perspectives: patient’s organisations are stakeholders for the rare renal ERN, and motivated for its development. They see it as an opportunity to expand access to good health care to all patients in Europe. This is a strong solidarity objective. The principle is that the expertise goes as close to the patient no matter the level of organization of the country in which the patient lives. FEDERG also sees the ERN as a process that will enhance organization of patients across Europe, and yield to greater mobilization for registries and trials with more patients.

In summary: “Better care for all and then better research”

View of the Participants at the meeting

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FEDERG representatives, de gauche à droite : Daniel Renault (Chair), Claudia Sproedt (Vice-Chair),
Marjolein Storm (NVN), Marjolein Bos (Cystinosis Netherlands & NVN).

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Alport Meeting in Göttingen

THE INTERNATIONAL WORKSHOP for ALPORT SYNDROME RESEARCH STRATEGY is ON:  Susie Gear from Alport UK and FEDERG and Professor Oliver Gross adressing the audience at the inaugural session Friday 25th 2015 Gottingen.

Some 100 participants, Nephrologists, Geneticists, patients’ representatives and pharmaceutical companies get together in Gottingen GERMANY at the invitation of Professor Oliver GROSS to shape the research for ALPORT SYNDROME.

During 3 days discussion will focus on Science and on how best organise the Alport Syndrome Community with the appropriate infrastructure for research (Registries, biobanks, etc..).

FEDERG is taking an important part in that endeavour through mainly Susie Gear from Alport UK, Daniel Renault from FEDERG and AIRG-France, Catherine Cabantous from AIRG-France.
The future of ALPORT Syndrome treatment will be discussed around the following 4 themes:
1   Basic and Translational Science, Gene/Chaperone Therapy
2    Diagnosis and Genetics
3     Standard of care, Repurposing Therapy, Carriers, Management of Extrarenal Symptoms
4     Future Therapy, Registries, Biobanks, Clinical Trial


Some impressions

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FEDERG present at the 48th Scientific Meeting of the European Society of Paediatric Nephrologists (ESPN) from the 3 to 5th September 2015 in Brussels.

The organizers offered a boot during the 3 days of the Congress. Thanks to AIRG-Belgium the logistic for FEDERG went smooth. The last day of the Congress FEDERG hold a Members Meeting in the premises of the Congress.

This has been an opportunity to make our presence known of the European nephrologists and of some pharmaceutical companies that were in the Hall of exposition.

The members meeting addresses several issues related to FEDERG mandate and management. The last meeting was held in June 2013, and this was an opportunity for the members to express how they see FEDERG in future. An important issue discussed has been the on-going initiative on the creation of European Reference Networks for Rare Renal Diseases.

On the scientific side of the congress more than 400 contributions, the Nephrotic syndrome was the focus of several sessions, this is a frequent paediatric disease. For the renal genetic diseases, a significant number of contributions on aHUS. Also noteworthy a joint session ESPN and ERA-EDTA (Adult) on APKD and the new possibilities for treatment. See full program at http://www.espn-2015.org/program.php

Photo on the booth (left to right): Michel Schenkel, Daniel Renault, Marjolein Bos, Tess Harris and Marjolein Storm.

Members meeting (left to right): Daniel Renault Michel Schenkel, Bruno Woitrin, Tess Harris, Marjolein Bos and Marjolein Storm.

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