XLH Matters 2024 GCC Edition: Insights and Recommendations to Improve Outcomes for People Living With XLH in the Gulf Region

The XLH Matters 2024 GCC Edition meeting convened 51 physicians from 6 Gulf countries to discuss the diagnosis and management of patients with X-linked hypophosphatemia (XLH). This was the first XLH Matters meeting held in the Gulf Cooperation Council (GCC) region, reflecting the unique healthcare structure, cultural context, and patient needs. The key themes of the meeting included: challenges faced by GCC clinicians in diagnosing and treating XLH, the importance of multi-disciplinary care, the psychosocial impact, and the principles of effective transition of patients from pediatric to adult care. Participants emphasized the importance of raising awareness of XLH among primary care physicians, pediatricians, and dentists to facilitate early diagnosis in the region. Genetic testing was highlighted as the key tool supporting diagnosis, but wider access to this is needed across the GCC. A structural, progressive, and personalized model for pediatric-to-adult transition was proposed, based on the individual needs of the patient and including patient empowerment and continuity of care. The meeting underscored the need for regional collaboration, awareness initiatives, and implementation of recent clinical guidelines to improve outcomes for people with XLH in the GCC region.