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Empowering Diversity and Inclusion for the PWS Community

The BIPOC Affinity group aims to connect people of color, living with or affected by PWS, to be empowered and live their best lives.

In a significant step towards fostering equity and inclusion within our Prader-Willi syndrome (PWS) community, we are pleased to announce a collaborative initiative aimed at improving the standard of care and support for marginalized individuals living with PWS and their families.

This initiative, undertaken with the active involvement of several community members, seeks to ensure that every person living with PWS, regardless of their background, can access better care and harbor hope for the future. As an initial measure, the community members established a BIPOC (Black, Indigenous, and People of Color) affinity group. This group is dedicated to people of color living with PWS and their caregivers, providing a platform to share experiences, offer mutual support, and develop necessary resources.


If you are a person of color or have children of color, you may join the BIPOC affinity group by emailing

For any questions or further information, please contact the BIPOC organizer group - Charles Conway, Karine Kabundi, and Dini Rao - at Together, we can make strides towards a more inclusive and equitable future for everyone affected by PWS.