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New Diagnosis
Now what?

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We know being diagnosed with a rare genetic condition can be overwhelming, but we're here to help! Please join our Parent and Caregiver Support Group on Facebook. To ensure privacy, this group is only open to immediate caregivers and parents. Other family members can join the Family Support Group!

Please CLICK HERE to register your child in our database. This helps us understand more about Lamb-Shaffer Syndrome and provide the most up to date information to the research team at the Children's Hospital of Philadelphia!


Like Raising A Rare's Facebook page. This is where we post about new fundraisers and updates about fundraising and research. We also post inspirational and REAL posts about Lamb-Shaffer Syndrome. 

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