Fibromuscular Dysplasia

Rare Disease 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

FMD group update February 2019

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.

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.

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

  • 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

Guidelines

NICE accredited clinical practice guidelines 

Available here

22nd Annual Report

Analyses about care provided to patients at UK renal centres.

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UKRR AKI Report

A report on the nationwide collection of AKI warning test scores. 

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