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.
Friday 1 March
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
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)
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
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 £100 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.