Eupati fellow, YOPD research advocate and DBS expert, advisor to various stakeholders, co-founder Eupati Belgium and Belgian Neuropatients Alliance. Representing the patient’s voice in several projects. Keen on talking about the unmet needs of People living with neurodegenerative conditions. Regular participant and speaker in conferences, workshops, meet-ups with industry, Roadmap Initiative to Good Lay Summaries. As YOPD is a rare condition especially in women I am proud of my BBMRI-ERIC Stakeholder Forum membership; always bringing the needs of patients to the table, as an equal partner, not as windowdressing or because it gets in necessary funding.
There is a before (diagnosis: 15/11/09) and after; I am now more focussed, driven, passionate about what I still can do, despite many challenges. I have ticked the box of raising awareness, fundraising and influencing policy makers. Now all I want to do is to eradicate shame, prove neuropatients are still valuable partners and fight stigma.
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