Family Searches for Donated Breast Milk for Son with Rubinstein-Taybi Syndrome (RTS)
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Family Searches for Donated Breast Milk for Son with Rubinstein-Taybi Syndrome (RTS)

Lauren Bruccoleri and her husband Matthew weren’t initially planning on having their son Grayson. But when Lauren found out that she was pregnant, she was overjoyed. However, Lauren and Matthew…

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A Journey to Self-Empowerment: What Kandise Has Learned from Life with Hereditary Multiple Exostoses (HME) (Pt. 1)
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A Journey to Self-Empowerment: What Kandise Has Learned from Life with Hereditary Multiple Exostoses (HME) (Pt. 1)

When Kandise MacLeod was twelve years old, she began noticing various growths and tumors popping up on her bones. These sometimes caused pain or discomfort; in one case, Kandise even…

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Adapting and Overcoming: How Chris Uses her HOD Diagnosis to Connect the Community (Pt. 2)
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Adapting and Overcoming: How Chris Uses her HOD Diagnosis to Connect the Community (Pt. 2)

Before you read on, make sure to check out Part 1 of our interview with Christina ("Chris") Coates. In Part 1, we discussed Chris' Cavernous Malformation, surgery, and diagnostic journey to hypertrophic…

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Real-World Data Shows that Epidiolex Significantly Reduces Seizure Frequency in LGS and Dravet Syndrome
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Real-World Data Shows that Epidiolex Significantly Reduces Seizure Frequency in LGS and Dravet Syndrome

Seizures associated with conditions such as Dravet syndrome and Lennox-Gastaut syndrome (LGS) can be difficult to treat; these seizures may be treatment-averse and may not respond well to current anti-epileptic…

Continue Reading Real-World Data Shows that Epidiolex Significantly Reduces Seizure Frequency in LGS and Dravet Syndrome