In partnership with the Family Advisory Committee, the Canada FASD Research Network (CanFASD) hosted a unique workshop in August 2016 entitled FASD Research: Learning Together. This event brought together caregivers of people with FASD, individuals with FASD, and FASD researchers for two days of discussion around FASD research in Canada. The goals were to share and discuss new knowledge related to FASD prevention, diagnosis, and intervention, and engage in multi-directional conversation to identify emerging issues that may guide future research directions. Prior to the workshop, a national online survey and several community discussion groups were conducted to gather information and form the basis for the workshop conversations.
Four main themes emerged from the online survey and discussion groups, and were expanded in the workshop discussions. These themes included: FASD as a Whole Body Disorder, Aging and Transitions, Strategies and Supports, and Advocating for Supports. In addition to these themes, workshop partici- pants offered their insights on effective collaboration and next steps for advancing FASD research in Canada. Participants expressed overwhelmingly positive feedback about the workshop, and 97% con- firmed that the themes presented were consistent with their lived experiences.
This work was funded by the Canadian Institutes of Health Research and Canada FASD Research Network.
FASD – Learning Together—Report from a two-day workshop bringing together over 60 participants to discuss four key topics: Whole Body Disorder, Aging & Transitions, Strategies & Supports, and Advocating for Supports. [UPDATED 2022]
FASD Research Priority Setting Session Report—Final report on the FASD Research Priority Session, the goal of which was to engage Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD) researchers, funders, stakeholders, and partners in a collaborative day to identify areas that require FASD research that will inform public policy. An additional goal was to share key findings from a patient engagement workshop with caregivers and individuals with FASD that took place in the two days prior to the meeting. The goal of this workshop was to explore emerging priorities for individuals and families living with FASD.
The Importance of Family Engagement in FASD Research—Slideshow from the CanFASD Research and Policy Series #4
