HPS’ers and CHS’ers urged to participate in Hands Across America

February 29th is International Rare Disease Day, a special day set aside across the world to bring attention to the experiences and issues facing those with rare disorders (affecting 200,000 or fewer people.) As part of this initiative, the National Organization for Rare Disorders is organizing a national online photo gallery of those with rare disorders.

To participate, you need only take a photo of yourself (or your child) holding the Rare Disease Day logo (downloadable at the link below). Then, go to the link below and upload your photo. Fill out the form identifying you (or your child) as a person with Hermansky-Pudlak Syndrome or Chediak-Higashi Syndrome.

http://rarediseaseday.us/meet-the-community/handprints-across-america-gallery/

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Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for...

The next generation with Hermansky-Pudlak Syndrome

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Some good news about Pirfenidone

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Living on the frontlines

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