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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

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

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

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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.

As you can see in the attached flyer, 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.

Now we thought this could be interesting for patient organizations too. So we would like to invite you to follow this symposion, listen to the specialists and take part in discussions. To keep this in a comfortable size, we will be happy to welcome two persons from every patient group in Europe or from every European country if there is no organization. We hope you will inform the patients in your country about the outcome of the conference.

Depending on how many participants will be there we will try to organize a short sightseeing tour as well. Salzburg has a lot of nice places to see and is known as the birth town of Wolfgang A. Mozart.

Salzburg has an international airport and can be reached by train or car of course.

For further questions please don’t hesitate to ask me or Anja Karl at Kinderklinik Traunstein who will be happy to help you. Her phone and email address are given on the flyer.

 

Download Flyer

 

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ERA-EDTA, 52nd Congress

ERA-EDTA is organising its 52nd Congress in London May 28 -31 2015. Tess Harris from PKD International will also represent FEDERG at this event.

ERA-EDTA is a European professional organisation (more than 7000 members) focussing on the advancement of medical science and of clinical work in nephrology, dialysis, renal transplantation, hypertension and related subjects.

ERA-EDTA is concerned by renal genetic diseases in many ways. One of the working group of ERA-EDTA deals with inherited Kidney Disorders (WG-IKD) ; This group is chaired by Pr. Olivier Devuyst, who is chairing the Scienticfic Council of FEDERG.

Link to the WG on IKD http://era-edta.org/wgikd/ERA-EDTA_working_group_on_Inherited_kidney_disorders.htm

The link to the website of the association is http://www.era-edta.org

The scientific program can be downloaded on the following link

http://www.era-edta2015.org/ERA-EDTA_London2015_Scientific_Programme.pdf

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FEDERG is on its way!

The launching meeting of the FEDERG’s initiative – Federation of European patient groups affected by Renal Genetic Diseases (RGD) – was held at the initiative of AIRG-France on May 26, 2012 as a dedicated meeting within the 49th ERA-EDTA Congress held in Paris, Palais des Congrès.

The launching meeting was supported by ERA-EDTA (European Renal Association and European Dialysis and Transplantation Association), by ESPN (European Society of Pediatric Nephrologists), by EURORDIS, and by AIRG-France.

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The meeting brought together 10 nephrologists, some had made the trip especially for the meeting FEDERG, and 10 representatives of associations of renal genetic diseases.

The meeting has been an opportunity for all participants of the launching, to express and share unanimously the desire to see the emergence of a European federation. The willingness to join forces is present, and is ready to concretize itself and expand to others.

The first part of the meeting chaired by Professor Yves Pirson, Chairman of the Scientific AIRG Belgium, focused on the perspective of nephrologists about the importance of considering the genetic renal diseases in a European context .The speakers were Professor Dominique Chauveau, Chairman of the Scientific Committee, AIRG-France, Prof. Oliver Gross, Nephrologist Göttingen, also representing the German group of patients on Alport syndrome, Dr Elena Levchenko of Leuven, representing pediatric nephrologists and the society ESPN, and  Prof. Olivier Devuyst Zurich, Head of the Working Group of the ERA-EDTA on Inherited kidney disorders.

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Each speaker was able to propose and develop strong arguments that advocate for an efficient organization at the European level of all patient groups and associations with a wide scope of diseases (renal and multi-organs) and not restricted to a single pathology.

The second part of the meeting, chaired by Daniel Renault, President AIRG France, was dedicated to identify the motivational elements of the associations represented and initialize the following preparations in the construction of the federation. Associations were represented either directly by the members present (some excused because of health problem) or by nephrologists attending the conference: – 8 countries of the EU-27 were represented: Germany – Belgium – Bulgaria – Spain-France – Ireland – Netherlands – United Kingdom; – 2 outside countries: Switzerland and Morocco as well as two international federations.

In the short time of two hours, the meeting allowed everyone to know each other and to outline areas of work and mobilization for the future. The collaboration between nephrologists and patient groups is recognized by everyone as the key to high efficiency. At the same time, it is recognized that it is hard to get patients mobilized in some contexts; therefore external support might be required. This should be one of the roles of FEDERG to support the emergence of local associations in national contexts unfavorable!

Beyond targeting a good collaboration between nephrologists and patient groups, the improvement of the “quality of life” for those who suffer from genetic kidney disease, has been emphasized by many as a priority. This should also be one of the focuses of a European federation.

Full reports of the meeting by clicking our AIRG-France website (see link below) and on the FEDERG web platform where you can directly contribute to and monitor the progresses of the federation.
http://www.airg-france.fr/archives/5168   

http://en.airg-france.fr/archives/3681

One of the main recommendations of the meeting is to quickly enlarge the basis of FEDERG to more associations, covering more pathologies as well as more European countries.

 

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Our federation reached another milestone on 4th April 2014: the act is signed.

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Photo 1:  Lawyer Mr. Watillon, Manuella Delplanck (AIRG-Belgium), Michel Schenkel (AIRG-Belgium), Secretary FEDERG.

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Photo 2:  Bruno Woitrin (AIRG-Belgium), Treasury FEDERG, Michel Schenkel (AIRG-Belgium), Secretary FEDERG.

As this initial stage, we have 12 constitutive associations and one associated member, which is by far a real success.

The next steps are:
– The registration of the act and of the proxies. When done, we will have copies of the act.
Submitting the documents for the royal decree to the Minister. When  accepted it will be submitted to the king’s signature.

 

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