04 Feb 2011
Long term studies on these syndromes are desperately needed to understand their natural history, to relate genetic diagnosis to predicting outcomes, to establish a basis for evidence-based management, and to develop new treatments.
Any health professionals caring for patients with one of these syndromes, as well as affected patients or family members, are urged to contact the project leader directly by email ([email protected]) or via the project website (link below).
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