E.S.PKU
@espku.org
E.S.PKU - European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria in the umbrella organization of about 41 national and regional associations from 31 countries established by parents and/or patients.
Special thanks to European Health Forum Gastein for the platform, and to our moderator Tresja Bolt for guiding such a thoughtful and engaging discussion.
October 2, 2025 at 6:18 PM
Special thanks to European Health Forum Gastein for the platform, and to our moderator Tresja Bolt for guiding such a thoughtful and engaging discussion.
Together with Steffen Thirstrup (EMA), Anita MacDonald (Birmingham Women’s and Children’s Hospital), Rosa Castro (EURORDIS) and Thomas Bols ( @ptcbio.bsky.social ) we explored how Europe can define UMN in ways that reflect patients’ lived experience & ensure communities like PKU aren't left behind
October 2, 2025 at 6:18 PM
Together with Steffen Thirstrup (EMA), Anita MacDonald (Birmingham Women’s and Children’s Hospital), Rosa Castro (EURORDIS) and Thomas Bols ( @ptcbio.bsky.social ) we explored how Europe can define UMN in ways that reflect patients’ lived experience & ensure communities like PKU aren't left behind