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James

PSD Evangelism

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I would like to enlist your support for spreading the word about Protein S Deficiency. I want you to be on the lookout for any places on the Internet where Protein S Deficiency should be mentioned but is missing.

For example, the Wikipedia has a List of Genetic Disorders which mentions Factor V Leiden but doesn't mention Protein S Deficiency (yet).

I would like to see every PSD Evangelist earn recognition for their work. If you add a reply to this topic with details of places you find, including the web address, we can document our progress.

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James, I applaude your enthusiasm, way to go! I wish there were more people like you, pro-active, rather than re-active. I LOVE you and I cannot even begin to say words to say "Thank you". Let me see what I can do. How is this URL? It is a general URL, but I have many posts there for clotting disorders:

http://www.askwaltstollmd.com

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Thank you Zarin. Ask Dr Stoll looks like a very useful web site. He writes articles and he has also compiled an index of topics discussed on his forum. I think the best way to get PSD featured on his web site is to generate some discussion specifically about Protein S Deficiency because he seems to be very efficient at consolidating topics into his index.

I have posted a question on his forum here...

http://askwaltstollmd.com/wwwboard/messages/320689.shtml

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The NIH Office of Rare Diseases has a list of names of more than 6,000 rare diseases and related conditions with links to select government databases.

Protein S acquired deficiency - http://ord.aspensys.com/asp/diseases/diseaseinfo.asp?ID=4523

Protein S deficiency - http://ord.aspensys.com/asp/diseases/diseaseinfo.asp?ID=4524

"Please Note: Currently there is no direct information on this page. You may want to contact the Genetic and Rare Diseases Information Center (GARD) and talk directly with an information specialist, who will provide for free or assist you in obtaining the information you need."

Oh Dear! Is Protein S Deficiency so rare that even the Office of Rare Diseases doesn't know about it?

"GARD is supported by the Office of Rare Diseases in partnership with the National Human Genome Research Institute, both of the National Institutes of Health. GARD can be reached at 888-205-2311 (phone), 888-205-3223 (TTY), or e-mail GARDinfo@nih.gov "

Could someone based in the US give them a call and see if they can be persuaded to update these pages? Let us know if you do and what their response was. Thank you.

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Guest simpson724

This is great! I've put this site's link on my blog. I have a desire to share my story of survival and am pursuing motivational speaking. So, when I'm rich and famous (haha).... I'll tell all about PSD!

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Thank you!

You can put a link back to your blog by updating your profile and putting the web address in your signature. Just go to the My Controls link found in the top section of each page.

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Thanks. I'll update my profile!

If you put the http:// in front of your web address the forum software will turn it into an active link for you.

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We have created a new group on Facebook to help raise awareness of Protein S Deficiency.

You can join by visiting http://www.facebook.com/group.php?gid=2506274438

Facebook also allows you to customise your account by adding applications. We asked the developer of Awareness Ribbons to add Protein S Deficiency to the list of causes. They accepted our request and a bright green ribbon is now available. You can help to raise awareness for PSD by adding the application "Awareness Ribbons" to your profile and then selecting the ribbon for Protein S Deficiency.

See http://apps.facebook.com/awarenessribbons/ for more information.

Please invite your friends on Facebook to help increase awareness of Protein S Deficiency by joining our group and adding the ribbon to their profile.

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I've just joined the facebook group. Thank you so much James. No-one seems to know about my condition in any detail. After reading your site, I now know why my sister was stillborn and realise how lucky I am to have survived my pregnancy with a healthy baby (albeit touch and go!). Let's try to make everyone aware, even if we are a rare group.

Sue (new member)

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I know it's been awhile, but has anyone from the states made that phone call to GARD? I didn't see an update about it...

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