Salle Debaisieux Friday 7 th June 2013 14h00-17h00 Federation of - - PowerPoint PPT Presentation

Federation of European Associations of Patients affected by Renal Genetic Diseases 1st General Assembly and Board Meeting Cliniques St Luc Salle Debaisieux Friday 7th June 2013 14h00-17h00

Federation of European Associations of Patients affected by Renal Genetic Diseases 14h00

• Pr. Yves Pirson USBL & Bruno Woitrin AIRG-Belgium

Welcome and introductory words Introduction of the representatives (in the room and on line) 1st General Assembly Designation of a Chairman for the GA Establishment of the final list of representatives at the first GA Vote on the status Vote for the Board of Directors Vote for the initial grid of fees Establishment of the FEDERG Scientific Council (Yves Pirson) 15h00 Roundtable on the European Research on RGD: shared perspectives by professionals and patient groups

16h00 1st Board of Directors of FEDERG

1st General Assembly

• Designation of a Chairman for the GA : Daniel Renault
• Establishment of the final list of representatives at the first GA
• Full members are:

– AIRG Belgium: Bruno Woitrin – AIRG-Spain Francisco Monfort – ASHUa Spain Francisco Monfort – AIRG-France Catherine Cabantous – Cystinose France Laëtitia LEPOIX – Cystinose Germany Claudia Sproedt – Renal Association Netherland Marjolein Bos – Cystinose Netherland Marjolein Bos – Alport UKCharity Susie Gear – aHUS UK Len Woodward

• Associate members:

– AIRG-Switzerland Alain Essade

• Members on line:
• Kidneycare Bulgaria

Veselina Dzhambazova

• PKD International

Tess Harris

1st General Assembly

VOTE 1: Votes on the status: Results full members: 10 Yes /10 Associate members: 1 Yes/1

Main comment attached: the status should provide room for individuals or small groups of European or non European countries, especially important for extremly rare diseases for which numbers are small even at national level.

1st General Assembly

VOTE 2: Vote for the Board of Directors

Candidates Representing Concerns Bruno Woitrin AIRG Belgique Bartter & All RGD Francisco Monfort AIRG-Spain aSHUa Spain HUSa & All RGD Susie Gear Alport UKCharity Alport Syndrome Michel Shenkel AIRG Belgique PKD Claudia Sproedt Cystinose Germany Cystinose Daniel Renault AIRG-France Alport Syndrome& All RGD

All candidates to the Board were elected as Directors by 10 voices out of 10

1st General Assembly

VOTE 4. The General Assembly commissions the board of FEDERG to prepare a grid for setting the fees according to capacity. This grid is to be submitted to an extraordinary assembly for approval before the end of the year with application for 2014. Voted 10 Yes/10 VOTE 3: The general assembly of FEDERG consider as a principle that the fees to be met by each member must be proportionate to its capacity. Voted 10 Yes/10

1st General Assembly

In view of reaching a sufficient budget for running FEDERG, it was suggested that a minimum initial contribution per member could be of 200 Euros, however the vote by the GA did not retain any threshold. VOTE 5. A transitory fees policy is adopted for the year 2013. It is left to each member to decide how much it can contribute as an initial impulse to the federation. VOTED by 10 yes/10

1st General Assembly

Establishment of the FEDERG Scientific Council:

• Pr. Yves Pirson, acting as scientific advisor for FEDERG initiative, proposed some
• ptions to create a Scientific Council (SC) for FEDERG.
• Pr. Olivier Devuyst as Chair of the FEDERG SC (ERA-EDTA)
• Pr. Elena Levtchenko (Belgium) (ESPN)
• Pr. Francesco Emma (Italy)
• Pr. Oliver Gross (Germany)

The Chair of SC of the existing AIRGs: Dominique Chauveau (France), Jean Pierre Guignard (Switzerland), Yves Pirson (Belgium), Roser Torra (Spain)

• Pr. Albert Ong (UK)
• Pr. Nine Knoers (Utrecht Nl)

This first proposal was approved, but discussions may continue in view of balancing the geographical provenance of members.

Roundtable on the European Research on RGD shared perspectives by professionals and patient groups

• Olivier Devuyst

Chair of the Working Group on Inherited Kidney Diseases of ERA EDTA

• Elena Levtchenko European Society of Pediatric

Nephrologist

• Marc Taylor

Renal Association (UK) (Chair of Rare Renal Disease committee)

• Oliver Gross

Nephrologist Goettingen[on line]

• Yann Lecam

EURORDIS

• D. Renault

AIRG-France and FEDERG

1st Board of Directors of FEDERG

• Election by the board of Directors

– President: Daniel Renault, – Vice-President: Claudia Sproedt, – Treasury: Bruno Woitrin – Secretary Michel Schenkel

• The board must carry out the task of writing the

FEDERG by-laws

• Closing of the meeting

Recall of FEDERG Project document and the list of activities discussed and consolidated late 2012

Core activity: Represent and voice RGD

• - Participate as a patients group, in European

professional societies, rare diseases’ committee, European Medecine Agency and on in the agencies involved in setting the European research agenda on rare diseases.

• - Contribute to the dissemination of public health policy

in countries of Europe

• - Help national associations voicing for equal access to

treatments.

• - Website: an information platform for RGD in Europe

Activity 1 INFORMATION: Information on Renal Genetic Diseases

• Update, translate existing RGD booklets in several

languages

• Participate to the dissemination of information to

patients via professionals in national and international events

• Strengthen the transversal knowledge on treatment

and on best practices on all what we have in common with regards to: Compliance, transplant, family and social, quality of life “growing and living with RGD”, genetic diagnosis, genetic advising, gene therapy.

Activity 2 PATHOLOGY : Support to pathology chapters

• Help associations' representatives (members) in organizing a

pathology chapter, within FEDERG

• Support participation of patients without national

associations Activity 3 NATIONAL GROUPS: Fostering and Empowering RGD national patient groups

• Help patients and associations getting together at national

levels (alliance, informal groups)

• Help creating umbrella national associations on RGD

Activity 4 RESEARCH: Research Agenda

• Participate as patients' organization to European projects
• Help developing research strategy
• Mobilize patients for clinical trials and establishment of

registry

• Help mobilizing funds for rare renal diseases

Activity 5 INTERNATIONAL: International cooperation

• Liaise with major patient groups worldwide
• Cooperate with patients groups from neighboring countries
• Represent Europe patient groups in international meetings

(patients and nephrologists)

A first assignment for FEDERG: representing patient in the Europen Research Projects EURenomics and RD-Connect (Starting January 2013) EURenOmics summary

• EUREnOmics is a European Research project granted with 12 Millions Euros

for the 2012-2017 period focusing on rare renal diseases. EURenOmics echoes the ambitious goals set out by the International Rare Disease Research Consortium (IRDIRC) to deliver by 2020 diagnostic tests for most rare diseases and 200 new therapies for patients affected by rare diseases. EURenOmics brings together leading clinicans, geneticists, translational researchers and experts in the field of -omics technologies devoted to improving the lives of patients afflicted with rare kidney disorders.

• EURenOmics has identified five groups of rare kidney diseases with the

urgent need and significant potential for di-agnostic and therapeutic progress: Steroid-resistant nephrotic syndrome (SRNS), membranous nephropathy (MN), tubu-lopathies, complement disorders and congenital anomalies of the kidney and urinary tract (CAKUT).

EURenOmics FEDERG is one of the 4 members of the Ethic advisory board! RD-Connect FEDERG is a member of the Patient and Ethic committee IRDIRC International project (not directly involved)

Patient Organisations at lauching meeting in Sitges

Joseph Irwin

• Member of the Jennifer Trust for SMA and TREAT-NMD
• Father of son diagnosed with Type I SMA

Marieke van Meel

• Chair and Founder of NephcEurope
• Mother of a son with Nephrotic syndrome

Daniel Renault

• President of AIRG-France, Founding member of FEDERG
• Father of daughter diagnosed with Alport syndrome

Marita Pohlschmidt

• Director of Research - Muscular Dystrophy Campaign
• Member of TREAT-NMD

Anna Kole

• Registry and Biobank Projects Manager, EURORDIS

Monica Ensini

• Scientific Director, EURORDIS

Pauline McCormack

• Research Associate, Policy, Ethics & Life Sciences (PEALS)

Research Centre, Newcastle University

Transversal Workshop, Kick-off meeting, 25th – 27th January 2013

Next slide is FEDERG CALENDAR of events in which we are or we may be involved!

Participation EURenOmics Kick-off meeting 25-27 January Sitges Spain. Represent RGD patient group in the EURenOmics (Ethical committee) and RD-Connect (with EURORDIS) European research projects. Daniel Renault Funded by EURenOmics EURORDIS Training Barcelona June 17-21 2013 “Development approval and access to orphan drugs and advanced therapy” - Daniel Renault Funded by EURORDIS RD-CONNECT Training at London School of Economics 24-25 June 2013 : Pharmaceutical Pricing, Access and Reimbursement Daniel Renault Funded by RD Connect INPA Shangai 2013 August 29 September 2nd Various Sessions Participation not planned Cost high (1700 Euros) ALPORT SYNDROME INTERNATIONAL SYMPOSIUM: building a strategy for research OXFORD January 2014 FEDERG co-

• rganizer

UK Alport International CYSTINOSIS Conference UK 2014 FEDERG co-

• rganizer ???

51st ERA-EDTA CONGRESS, AMSTERDAM 2014 Suggest a FEDERG BOOT and hold a GA and a Board meeting !!! European Society of Paediatric Nephrology (ESPN) PORTO 18- 20 September 2014 Suggest to participate with a Boot and have a presentation?? ??????? 52st ERA-EDTA CONGRESS LONDON 2015