Vote 4 Hope at Pepsi Refresh To Find Cures for Rare Skin Conditions like Epidermolysis Bullosa, Harlequin Ichthyosis, Xeroderma-Pigmentosum

September 2, 2010 by Chris Hempel
Filed under Videos

During the Vote4Hope Pepsi Refresh Rare Disease Campaign, I am making video postings throughout September to raise awareness for all rare diseases, not simply the horrific disease called Niemann Pick Type C that my six year old identical twins suffer from. Today’s videos are some of the most heartwrenching videos I have ever watched. The […]

Tags: Argyria, Boy Beneath the Bandages, Children's Rare Disease Network, Epidermolysis Bullosa, Global Genes Project, Hallopeau–Siemens disease, Harlequin Ichthyosis, list rare skin conditions, Morgellons Disease, Neutrophilic Dermatosis, Niemann Pick Type C, Pepsi Refresh, Rare Disease Day video contest, Recessive dystrophic epidermolysis bullosa, skin, skin disorders and rashes, Sweets Syndrome, Sweets Syndrome or Neutrophilic Dermatosis, Urticaria, Vote 4 Hope, Vote4Hope Pepsi Refresh, Xeroderma-Pigmentosum

Rare Disease Foundations Need To Vote 4 Hope In Pepsi Refresh

September 1, 2010 by Chris Hempel
Filed under Videos

2 Comments

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

The Addi and Cassi Fund - Niemann Pick Type C

Vote 4 Hope at Pepsi Refresh To Find Cures for Rare Skin Conditions like Epidermolysis Bullosa, Harlequin Ichthyosis, Xeroderma-Pigmentosum

Rare Disease Foundations Need To Vote 4 Hope In Pepsi Refresh

CNN – Dr. Sanjay Gupta Follows Addi & Cassi for 4 Years

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