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:
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