¿Qué consejos darías a una persona que acaba de ser diagnosticada con Síndrome de Stickler?

Consejos para recién diagnosticados de Síndrome de Stickler, escritos por quienes ya lo han vivido: lo que les habría gustado saber el primer día.

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Here's my advice to a parent with a child with sticklers. Get a good Dr who actually knows what stickler syndrome is. Start with the Major cities. Get involved and find us advocates were here to help. It will seem like your child is going through hell but you the parent must remain calm and remember your baby will be ok.

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