Fibromuscular Dysplasia – RDG

  • Aims of the Group

    The main objectives of the Fibromuscular Dysplasia Rare Disease Group are to:

    • Raise awareness and provide advice about the best strategy for the diagnosis and management of this still underdiagnosed disease.
    • Study the presentation of the disease and baseline patient demographics.
    • Study the prevalence of different subtypes of Fibromuscular Dysplasia, the incidence and determinants of disease progression/extension and complications
    • Develop a Register of long term impact of intervention, as part of RaDaR
  • Current Activities

    The RDG will initially focus on a review of current evidence to provide guidance on:

    • who to screen
    • family screening
    • managing children and adults with Fibromuscular Dysplasia
    • molecular testing
    • monitoring disease progression
    • management of hypertension.
  • International Links

    The group have liaised with Dr Persu who has a longstanding interest in Fibromuscular Dysplasia with international links and established the European Fibromuscular Dysplasia registry.

  • Patient Support Groups

    The Fibromuscular Dysplasia Society of UK & Ireland is a patient group with the mission of supporting people affected by FMD, raising awareness about FMD with health care professionals and supporting research into FMD. For more information please see: Facebook: www.facebook.com/FibromuscularDysplasiaSocietyUKandIreland Twitter: twitter.com/FmdsUk Rare Connect: www.rareconnect.org/en/community/fibromuscular-dysplasia

    There is also the very active Fibromuscular Dysplasia Society of America.

    Patient Information Day Write-Up

    The Fibromuscusular Dysplasia Rare Disease Group have produced an update on their recent patient information day in Salford and a review of current literature.

    FMD group update

  • Reports
  • Group Members
    • Prof David Adlam, Professor of Acute and Interventional Cardiology, Honorary Consultant Interventional, Cardiologist, University of Leicester
    • Ms Lynn Ashton Patient Representative
    • Dr Tina Chrysochou, Consultant Nephrologist, Salford Royal Hospital  RDG Lead
    • Dr Neeraj (Bean) Dhaun, BHF Intermediate Clinical Research Fellow & Honorary Consultant Nephrologist, Centre for Cardiovascular Science, Queen’s Medical Research Institute, Edinburgh
    • Miss Jennifer Drai, Patient Representative 
    • Dr Graham Lipkin, Consultant Nephrologist, Queen Elizabeth Hospital Birmingham  
    • Prof Patrick Mark, Professor of Nephrology, Institute of Cardiovascular and Medical Sciences, University of Glasgow
    • Prof Una Martin, Professor of Clinical Pharmacology and Hypertension Lead, Institute of Clinical Sciences, College of Medical and Dental Sciences, University of Birmingham
    • Prof Alexandre Persu, Collaborator from European FMD Registry, Cliniques Universitaires Saint-Luc, Brussels
    • Ms Karen Rockell, Patient Representative
    • Dr Pauline Swift, Consultant Nephrologist, Renal Services, Associate Medical Director for R&D and Innovation, Epsom and St. Helier University Hospitals NHS Trust
    • Ms Angeline Young Patient Representative
  • Disclosure of Conflicts of Interest

    None reported

Fibromuscular Dysplasia RDG Version 6 Updated February 2019
Written by the Fibromuscular Dysplasia Rare Disease Group