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Unregistered User
(12/9/02 1:33 am)
January 10 meeting information
As you know, we were successful during our meeting of December 6. You have received the minutes of that meeting and are aware of the commitments made by several people. To discuss old and new business, we are scheduling another meeting.

When: Friday, January 10 at 9 EST


Agenda: To discuss old business (projects); new business (ideas and new approaches, etc);planning for direction of the group (Organization or nonprofit, etc)

This is opened to everyone. Hope to see you there. If there are objections to the date and time, please share with others not listed in the group.

I recommend that you create a poster and send to your doctor's office so others not in the "list" are aware that there is an effort to organize.

This message is being posted on the site and share with everyone on the existing list to insure equal information sharing.

Unregistered User
(12/9/02 2:24 am)
Agenda for January 10 meeting - Old business
Just to remind those in the group, these were the points proposed. Those of you with tasks addressing each point, please be prepared to present your progress so far and next steps.

Please make a list of any new business you want to discuss during this meeting.

1. We must file as a nonprofit organization in order to formally organize and be recognize by other organizations.
>2. We need to join NORDs list.
>3. We need to begin to find physician sponsors [sponsor is someone who will coach us through the medical community, sit on our board...basically bring >D own walls for us]....Susan and I have a few we would like to approach. We will need a sponsor to promote and validate our disorder.
>4. Begin to build a physician network where in the physicians educate one another.
>5. You guys have done a fantastic job with the website. Once we receive nonprofit status, we would have the ability to begin to gather patient

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