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Fabry Matters Conference 2024


About the Event

The Fabry community is often asked to contribute to research that doesn’t always tackle what is important to you or that doesn’t get to the heart of the issues. We want to change this by hosting a conference that will include exciting talks and discussions on what is meaningful and useful to the Fabry community, and updates on innovations and current research helpful to everyday life.

Attend for free

At the conference you will have the opportunity to make your voice heard and directly contribute to research. Thanks to a donation, we can now offer reimbursement of the cost of your ticket price up to £100* if you participate in research opportunities, including surveys, interviews and focus groups, which will be available throughout the weekend. We can also support you with a structured payment plan, find out more.

Funding opportunities for professionals

Professionals attending this event can apply for various funding opportunities for future research or funded places for students or junior researchers. Get in touch to find out more or complete the application form for a complimentary professional place or for the Fabry Matters grant application.

Get our official event app

The app is now live! Download to see the event agenda, plan who to meet and participate on the community board.

Weekend agenda

Friday 1 March

15:00 Arrival

17:00 Welcome - Prof Derralynn Hughes and Bob Stevens

17:15 Developing services for Fabry Disease - Support & Advocacy Team

17:45 The importance of getting involved in research - Les Hilliard, Sophie Thomas, Prof Derralynn Hughes

19:00 Dinner

Saturday 2 March

9:15 Welcome and introduction to genetics - Alison Wilson

9:30 Why family communication matters - Dr Viraj Patel

10:00 Talking to your teens - transition matters - Dr Uma Ramaswami

10:45 FABRY COMMUNITY: Sharing experience of family communication - Dr Viraj Patel and Alison Wilson

10:45 PROFESSIONALS: The ethics of family communication - Dr Lisa Ballard

11:45 Amicus Focus Group (invitation only)

12:30 Lunch

13:30 Introduction to Fabry Treatment Guide - Sophie Thomas

13:45 Living with Fabry Disease - David Moreno-Martinez

14:15 Nutrition - Dr Seema Kanwal

15:00 FABRY COMMUNITY: Workshop on employment - Loretta MacInnes

15:00 PROFESSIONALS: Study design - focussing on unmet needs - Prof Derralynn Hughes, Dr Ashwin Roy

15:30 FABRY COMMUNITY: Women’s health forum - Claire O'Meara, Dr Seema Kanwal

15:30 FABRY COMMUNITY: Men’s health forum - David Moreno-Martinez

16:30 Chiesi’s Rare Rewind session (This session has been funded by Chiesi Limited, developed in collaboration with MPS Society and Rare Disease Research Partners (RDRP) and presented by RDRP)

17:15 Research updates - Prof Tarek Hiwot

17:45 Dragon’s Den

19:00 Dinner

Sunday 3 March

9:20 Introduction to final day - Support & AdvocacyTeam

9:30 Understanding Fabry and mental health - What is Fabry Fog? - Dr Nadia Ali

10:00 Physical activity and exercise - Dr Daniel Bailey, Sarah Gosling

10:30 FABRY COMMUNITY: Mental health workshop - Dr Nadia Ali

10:30 PROFESSIONALS: Case Discussions - Prof Derralynn Hughes

11:45 Sanofi Focus Group (invitation only)

The MPS Society reserves the right to alter the programme at any time.

*Register until 5 February for the ÂŁ100 early-bird offer covering the whole conference for up to two people sharing with full board. Offer available for people who have booked as a Fabry community attendee only (someone with Fabry or their family member). No refund can be given if you do not attend the conference or decide not to contribute. Offer is good for all current and future registrations. Reimbursement will be made after the conference.