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npsteensgroup
< 5 Members,
Archives:
Membership required
NPSTeens group is currently an [i]active[/i] group. We are a support and networking forum for young adults aged 13+ to discuss living with NPS, as well
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Stalefish
6 Members,
Archives:
Membership required
For people who are just learning about this horrible disorder and think they might have it.
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PNWBRCAFriends
A group of friends in the Pacific NW, BC and Oregon who share known or unknown BRCA genitics.
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kmm9ksm6
Phosphorylase deficiency ,muscle disease,
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lysofriends
5 Members,
Archives:
Membership required
The Lysofriends group is focused on supporting teens ages 13-20 affected by lysosomal storage diseases. The group is a place to
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klinefelter
Thank you all for being a part of our Klinefelter' s Syndrome support group. As you have probably heard by now, a bunch of your fellow members are over at Our Yahoo group isn’t going ...(more)
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HPSupport
31 Members,
Archives:
Membership required
This group is designed to act as an online support group for the Univerisity of Pittsburgh Medical Center's Hereditary Pancreatitis Study Participants. Membership to this group must be
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mps6cess
15 Members,
Archives:
Moderators only
I would like to welcome you to join my group. The purposeof this group is to support individuals with MPS disorder, which is short for a rare genetic disorder called Muccopolysaccharido ...( more)
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sadsconnect
36 Members,
Archives:
Membership required
People under 20 have heart disease, too! This group is for young people with Long QT, cardiomyopathy, arrhythmias or other SADS conditions to receive and share support, feedback and ...( more)
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queenfairy1SmithMagenis
A place for parents of SMS children to compare , talk, share, informational behaviors, habits, etc. with other parents. Qustions and answers we all
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