FEDERG  renewed its visions and plans for the next years. 15 different patient groups being part of the members‘ assembly that took place in Amsterdam on 3rd of March 2017 defined gols and developped strategies to expand to less represented countries. Patient representatives from Rumania, Poland and Slovakia being ready to become new members of the network. New important topics will be: connecting patients with rare or genetic renal diseases even if they don’t have a support group in their country access to medication for patients in all European countries,
support efforts to connect national patient groups to European networks in FEDERG.


EPag ERKNet has been launched
In a meeting organised by FEDERG on 4th of March 2017 all workgroups of the European Patient Advocacy Group in the newly established European Reference Network for Rare Renal diseases (ERKnet) could be started. Representatives of 25 different European patient groups set up their suggestions, plans and goals for their participation in the network. Healthcare pathways were prepared and discussed and topics fort he next meetings set. The official start of all ERNs will be on 9th of March in Vilnius / Litauen.



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The ERA-EDTA WGIKD (Working Group on Inherited Kidney Disorders) has just published recommendations for the use of Tolvaptan in ADPKD.

Recommendations for the use of tolvaptan in autosomal dominant polycystic kidney disease: a position statement on behalf of the ERA-EDTA Working Groups on Inherited Kidney Disorders and European Renal Best Practice


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European Journal of Human Genetics

The article is signed by RD Connect researchers on the basis of the work done so far by various committees where FEDERG is active. The RD Connect paper on informed consent, which FEDERG contributed to via the Rome workshop and paper drafts has now been published. It’s open access and so available for all to read:

Improving the informed consent process in international collaborative rare disease research: effective consent for effective research.’ is now published online in EJHG http://www.nature.com/doifinder/10.1038/ejhg.2016.2 in our Advance Online Publication (AOP) service.

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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

IMG_6206 (1)

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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A call for research project on Alport syndrome: The call is financed by a group of European associations for Information and Research on Kidney Disease Genetic (AIRG). This group includes AIRG-France, AIRG-Spain and AIRG-Belgium. This tender, 2016, has a budget of 150.000 € (Hundred and fifty thousands) over two years to finance in 2016 and 2017, one or more innovative and targeted projects in this disease (Ref. 2016 ALPORT AIRG-FEB).

This is a full-fledged international call without geographical restriction.

For more information on the call, visit the web sites:

or contact:


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At the onset of 2016 a good news for Genetic diseases: CRISPR/Cas9 is opening new avenues: The positive results of the first animal tests of the new promising technique of modifying the ADN using with CRISPR/Cas9 to treat Duchenne Muscular Distrophy (CRISPR/Cas9 is a sort of cut/copy/paste/insert tool as we know on text software, that works for ADN).

The way ahead is still long to become a human cure for some genetic diseases but somehow the direction is set, and no doubt the technique will be massively investigated by research teams the world over.


Hiroshi Nishimasu, F. Ann Ran, Patrick D. Hsu, Silvana Konermann, Soraya I. Shehata, Naoshi Dohmae, Ryuichiro Ishitani, Feng Zhang, and Osamu Nureki – Crystal Structure of Cas9 in Complex with Guide RNA and Target DNA http://dx.doi.org/10.1016/j.cell.2014.02.001
the crystal structure of Streptococcus pyogenes Cas9 in complex with sgRNA and its target DNA at 2.5 A ˚ resolution.
Licence: CC BY-SA 3.0
Source: Wikipedia
Image: Nielsrca – based on: System Bio and Origene
graphical overview of CRISPR Cas9 plasmid construction
Licence: CC-BY-SA 4.0
Source: Wikipedia


Here below the links to the abstracts of the 3 publications published on the last day of 2015.

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