Patient Advisory Council (PAC)

The Patient Advisory Council (PAC) is comprised of a multidisciplinary group of patients, parents, representatives of patients’ organisations, clinicians, legal academics, sociologists, scientists and ethicists. It informs partners from RD-Connect, EURenOmics and NeurOmics of issues important to patients. This will ensure that all project activities have a patient-centric approach throughout. The PAC is coordinated by an RD-Connect partner, the European Organisation for Rare Diseases (EURORDIS), which synchronizes activities in respective projects and invites patient representatives to meetings and discussions. Issues, concerns or dilemmas brought forth by the PAC are addressed by the Rare Disease Patient and Ethics Council (RD-PEC) as well as all project partners.

PAC objectives

On a regular basis, the PAC advises the RD-Connect project coordinator and Governing Board from the patient perspective. Participant’s role in the PAC is to serve as an active member of a EURORDIS working group collecting different patient views on issues surrounding registries, biobanking and omics research.

The PAC’s tasks include:

  • identifying issues important to patients in the context of the project
  • learning/educating other patient representatives about technical, legal, ethical and social issues surrounding the approaches included in the projects by attending capacity building workshops (with full financial support for travel and accommodation)
  • communicating on the project’s progress with patient constituents
  • participating in regular meetings and conference calls
  • contributing to or reviewing policy documents and reports representing patient views
  • participating in and distribute questionnaires to patient constituents
  • providing constructive feedback to the RD-Connect Governing Board and the RD-PEC

Membership

The PAC consists of patients and patient representatives representing the diversity of diseases covered by RD-Connect, EURenOmics and NeurOmics projects and a representative group of EU countries. Membership is voluntary.

PAC Terms of Reference

 

Members

Virginie Bros-Facer

EURORDIS – Rare Diseases Europe

Virginie manages EURORDIS’ participation in projects (including RD Connect) related to infrastructures and technologies facilitating rare disease research such as patient registries, biobanks, clinical bioinformatics and next generation sequencing as well as ethical issues surrounding this pre-clinical research.

Muriel Gevrey

CMT France

Affected by Charcot-Marie-Tooth (CMT) disease and from a CMT family, Muriel Gevrey was an active member of CMT-France for several years before becoming president in 2012.

Joseph Irwin

Lakeside Regulatory Consulting Services Ltd.

Joseph is a biochemist-pharmacologist and worked for many years in hospital-based research and for the pharmaceutical industry. Presently, he is an independent consultant on regulatory matters. He supports the Paediatric Task Force for the European Organisation for Rare Disorders (EURORDIS) and focuses on rare neuromuscular diseases. Within RD-Connect, he is a member of the Scientific Advisory Board (SAB), Rare Disease Patient and Ethics Council (RD-PEC) and Patient Advisory Council (PAC).

Julian Isla

Dravet Syndrome Foundation

Julian Isla is the father of a child with a rare disease. He is founder and chairman of the Dravet Syndrome Foundation and is also the president of the Dravet Syndrome European Federation.

Sigurður Hólmar Jóhannesson

AHC Federation of Europe

Sigurður Hólmar Jóhannesson is the Founder and president of Alternating Hemiplegia of Childhood (AHC) association of Iceland, co-founder and president of the AHC Federation of Europe and co-founder and moderator of the AHC International Alliance.

Lydie Lemonnier

Vaincre la Mucoviscidose

Lydie worked as the data entry coordinator at the French Agency for transplantation until 2003 and has been the Registry Manager for the French Cystic Fibrosis Registry since 2008.

Dorthe Lykke

Euro HSP

Dorthe is President of the Federation of European Hereditary Spastic Paraplegia Associations (Euro-HSP) and vice-president of the Danish association for Ataxia and Hereditary Spastic Paraplegia.

Kay Parkinson

Alstrom Syndrome UK

Kay is the mother of two children who were diagnosed with Alström Syndrome.She founded the charity Alström Syndrome UK (ASUK) in 1998 and Alström Syndrome Europe (ASEU) in 2012.

Veronica Popa

Veronica Popa

Veronica is the mother of a child with Allan-Herndon-Dudley syndrome. She is reaching out to both patient and scientific communities in order to create the first AHDS patient registry and the first patient organization in order to boost research in this field.

Daniel Renault

FEDERG Initiative

Daniel Renault is the Chair of the Federation of European Associations of patients affected by Renal Genetic Diseases (FEDERG) and a Board Member of Association for Information and Research on Genetic Renal Diseases (AIRG-France) since 2010. His daughter is affected by Alport Syndrome.

Françoise Rouault

Association Française contre les Myopathies (AFM)

Dr. Françoise Rouault joined the scientific direction of the French Association for Myopathies (AFM) in October 2009 as International Scientific Affairs Manager. She has extensive experience in scientific research for development of novel therapies.

Inge Schwersenz

Deutsche Gesellschaft fuer Muskelkranke (DGM), Initiative SMA

Inge Schwersenz’s son has Spinal Muscular Atrophy. She wants to make sure that patients in clinical trials are not exposed to any harm, while making sure that there are no unreasonable delays in promising clinical trials.

Chris Sotirelis

UK Thalassaemia Society

Chris is a patient with beta thalassaemia major representing the UK Thalassaemia Society and has been a tireless patient advocate for EURORDIS and the Rare Disease community at national and international level for many years.

Oliver Timmis

AKU Society

Oliver is the Head of Projects at the Alkaptonuria Society and leads on funding applications for new projects related to Alkaptonuria.

Marieke van Meel

NephcEurope Foundation

Marieke is a mother of a child with the nephrotic syndrome and the initiator of a multinational alliance for Nephrotic Syndrome which in 2010 lead to the founding of NephcEurope Foundation.

Jenny Versnel

Muscular Dystrophy UK

Jenny Versnel is Director of Research and Business Innovation at Muscular Dystrophy UK with responsibility for their neuromuscular research programme. With a PhD in Biotechnology from the University of Cambridge, Jenny has worked as a scientist in the charitable, academic and commercial sectors for over 20 years.

Rainald von Gizycki

PRO RETINA Deutschland e.V.

Rainald is the founder, former chairman and currently honorary president of the German organisation PRO RETINA and also serves on the board of Pro Retina Foundation Fighting Blindness.

Elizabeth Vroom

Elizabeth Vroom

Elizabeth is the president of the Dutch Duchenne Parent Project and the chair of the worldwide United Parent Projects Muscular Dystrophy (UPPMD). She is also a member of the Project Ethics Council and the Advisory Committee for Therapeutics (TACT) at the TREAT-NMD neuromuscular network.