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During the Vote4Hope Pepsi Refresh Rare Disease Campaign, I am making video postings on Addi and Cassi’s website to raise awareness for all rare diseases, not just the horrific disease called Niemann Pick Type C that I am fighting against on behalf of my six year old identical twins. Please take a minute to watch […]
Tags: Bruguda Syndrome, Chromosome 6 Deficiency, Citrullinemia, Congenital Central Hyperventilation Syndrome, Dandy Walker Syndrome, Erythropoietic protoporphyria, Gaucher Type II, Haemangioma, identical twins, Krabbe disease, Langerhans Cell Histiocytosis, NBIA Disorder, Niemann Pick Type C, Pallister Killian Syndrome or PKS, Patau Syndrome Mosaic or Trisomy 13, Primary Immune Deficiency, Recessive dystrophic epidermolysis bullosa, Spinal Muscular Atrophy Type 1, Spinal Muscular Atrophy Type 2
