Skip to main content

Fifth annual HPS Conference Puerto Rico is coming up in August!

My hats off to everyone in Puerto Rico working so hard to make this event happen. Bless all of you! Here's the info for any possible blog readers that might need it - and so that the rest of us in HPSland can cheer on Puerto Rico in all of their hard work and effort.


5ta Conferencia Anual de Albinismo y el Síndrome de Hermansky-Pudlak
Date: Saturday, August 14, 2010
Time: 8:00am - 4:00pm
Location: Club de Leones de Mayaguez, Carr #2

Description.La Organización sin fines de lucro HPS Network Puerto Rico Inc. se complace en invitarles a participar de nuestra 5ta Conferencia Anual de Albinismo y el Síndrome de Hermansky-Pudlak. Habran charlas educativas, educación contínua para édicos y pruebas de función pulmonar para aquellos pacientes que deseen hacersela. La actividad es totalmente libre de costo.

Para más información: Stra. Vergne Coordinadora Asministrativa
(787)-313-4643

Esta Actividad se es organizada y coordinada por el HPS Network. La misma es costeada gracias las donaciones que son recibidas a través de año. No recibimos fondos federales de ninguna índolo ni trabajamos en colaboración con ninguna otro grupo u organización para realizar nuestra conferencia. HPS Network apoya a diferentes grupos de Albinismo formados y patrocinados por diversas instituciones, pero no esta unida a ninguna de las mismas.

Protegemos el derecho de confidencialidad de nuestros miembros y estamos aquí para colaborar en todo lo que nos sea posible.
Labels:

Comments

Post a Comment

Popular posts from this blog

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
1 comment
Read more

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.
Post a Comment
Read more

Some good news about Pirfenidone

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria
Post a Comment
Read more