Overgrowth Syndromes Alliance

The Overgrowth Syndromes Alliance (OSA) has been recently formed, and we’re really pleased that Child Growth Foundation are involved in this international alliance.

OSA Patient Priority Survey

The OSA developed a patient priority survey to gather the most important needs of their communities to share with researchers.

The data collected from the OSA Patient Priorities Survey was presented at the National Organization for Rare Disorders (NORD) Breakthrough Summit in Washington DC, October 15th-17th October 2023. Thank you for making your voices heard. You can view the 2023 NORD OSA Patient Priorities Poster here.

This survey will be open indefinitely and the OSA will revisit the responses annually. To take part in the survey click here.

OSA Scientific Meeting

The first OSA Scientific Meeting is being held in early 2024. Patient priorities across Overgrowth-Intellectual Disability (OGID) syndromes (Malan, Tatton-Brown Rahman, Sotos, Weaver, PIK3CA and Smith-Kingsmore) will be shared at this meeting. Researchers, clinicians and industry partners, all with an interest in overgrowth, will be in attendance.

The goal of the OSA is to promote patient-centred research that is of the greatest benefit to the larger OGID community.