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 do, aware of who I am as ever before. I have ticked the box of raising awareness, doing fundraising and feeling guilty. Working hard at eradicating shame and stigma. IF I can be of use for your company, startup of initiative, do not hesitate to get in touch.
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