About this Website  

Who runs this group and website?
This group and website is run by its members. Originally Rebecca Gaskin of Oregon established a Yahoo! Groups email group whereby people interested in PNH could share their experience and information. After Rebecca passed away in 2003, the group as a whole took on the initiative to move to a web-based site. This allows us to keep our conversations going, but also provides us with other features including the WebLinks, Glossary, FAQ, Chat, Photo Album, posting of articles, and many other features.

There is a Website Committee that is responsible for the day-to-day running of the site.


Who is on the Committee?
The Website Committee consists of the following people:

Sara Main contact info@pnhdisease.org  
Adrian Webmaster webmaster@pnhdisease.org  
Silvia PNH Websites weblinks@pnhdisease.org Secondary contact (backup to Sara)
Margaret PNH Files files@pnhdisease.org  
Margaret PNH FAQ faq@pnhdisease.org Also updates the In Memorium Page
Melissa Newsletter editor newsletter@pnhdisease.org  
Heather Special date reminder reminders@pnhdisease.org  
Tamir PNH Glossary glossary@pnhdisease.org Tamir is the liaison to the AAMDSIF, as he is on the board. Also the backup Webmaster.


Who is paying for this site?
One of the members of the PNH support group is paying for the hosting of this website.

Is this a moderated site?
No, posts are not moderated.

How long will my account last?
We didn't want to have a lot of accounts hanging around for people who aren't actually using the site. Therefore, inactive accounts will be removed. If you do not log in to the site for 26 weeks, your account will be removed. If you decide to rejoin later, no problem. You will need to contact webmaster@pnhdisease.org to re-instate the account.

Do you disclose, sell or exchange your members list?
No.

I want to get the newsletter...
The newsletter is published two or three times per year and is available in the Downloads section for Members. To get on the mailing list for the hard copy, email the editor, Melissa, at newsletter@pnhdisease.org with the following information:

Name
Address (complete with country)


I have something to put in the newsletter...
There are a number of members who help out with the creation of the newsletter. We are always looking for newsletter content. You are welcome to submit anything for the newsletter to Melissa at mzlippy@yahoo.com

Who pays for the newsletter?
Layout services are donated by Chris Valcik. Printing is donated by Health Care Association of New York State Printing Services. Newsletter content is coordinated by Melissa and other members for free.

For years the newsletter was paid for by private donations directly to the editor to cover the mailing costs. In January 2004, the group obtained an unrestricted educational grant from Alexion Pharmaceuticals to pay for the mail-outs.


Do you disclose, sell or exchange your newsletter mailing list?
No.

Why are we donating to AAMDSIF?
The Aplastic Anemia & MDS International Foundation, Inc. (AAMDSIF) is a patient support group for Aplastic Anemia (AA), Myelodysplastic Syndromes (MDS), and related bone marrow diseases. PNH is a "related bone marrow disease". The AAMDSIF has some literature on PNH. They also coordinate a fund that will go directly to PNH research. It is called the "PNH Research Fund". If you wish to support PNH research, you can contribute to that fund by clicking on the logo on the left hand side navigation. Please make sure that you put "PNH Research" under "This gift is made in honor of". That way the money will be directed to the correct fund.