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<blockquote data-quote="seriously" data-source="post: 443799" data-attributes="member: 11920"><p>The thing about Shriner's is that they often have the MOST experience treating rare/unusual cases of any pediatric physicians anywhere. They see kids from all over the globe that no one else sees because their services are free. So if anyone has experience with this condition is it, in my opinion, very likely going to be a Shriner's ortho team.</p><p></p><p>That said, it may not be the team in Philadelphia. it might be the one in Toronto or Sacramento or elsewhere. But the Philly team will know who has the most experience. And, at least in our experience, they will sometimes arrange transport for a kid to be seen at a different facility with more experience with an extremely rare condition like this.</p><p></p><p>So I really do suggest you at least call them and ask to talk to the Ortho team advice nurse about their experience treating this specific condition.</p><p></p><p>Our oldest son has an extremely rare bone disorder and has the most rare form. Shriner's was the only place that had treated these kids.</p></blockquote><p></p>
[QUOTE="seriously, post: 443799, member: 11920"] The thing about Shriner's is that they often have the MOST experience treating rare/unusual cases of any pediatric physicians anywhere. They see kids from all over the globe that no one else sees because their services are free. So if anyone has experience with this condition is it, in my opinion, very likely going to be a Shriner's ortho team. That said, it may not be the team in Philadelphia. it might be the one in Toronto or Sacramento or elsewhere. But the Philly team will know who has the most experience. And, at least in our experience, they will sometimes arrange transport for a kid to be seen at a different facility with more experience with an extremely rare condition like this. So I really do suggest you at least call them and ask to talk to the Ortho team advice nurse about their experience treating this specific condition. Our oldest son has an extremely rare bone disorder and has the most rare form. Shriner's was the only place that had treated these kids. [/QUOTE]
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