Our Managing Director, Emma Weatherley presented at the 32nd Annual International Research Congress in Amsterdam alongside renowned clinician, Nicol Voermans (FSHD Europe, Radboud University Medical Center) to outline our ambition to develop global clinical guidelines for Advance Care Planning and Palliative Care for FSHD along with our co organisers Dr Chris Turner and Prof Derek Willis.
There is significant unmet need in our community – these discussions are necessary and require a standardised framework for both patients and clinicians to feel supported and prepared to manage advanced stage disease and ensure quality of life is maintained to the highest degree possible.
Thank you to the FSHD Society for highlighting the importance of this critical work and to Nicol, FSHD Europe, and the ENMC Non-profit for your collaboration and commitment to improved quality of life for people living with FSHD.