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

    UK and Ireland’s First Patient Information Day on Fibromuscular Dysplasia (FMD) will take place on Saturday 19th January 2019 at Salford Royal Hospital

    Agenda

    The event is free to attend. To register please contact fmd.ukireland@gmail.com or @FmdsUk

  • Reports
  • Group Members
    • 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 5 Updated October 2018
Written by the Fibromuscular Dysplasia Rare Disease Group