Click this link to read a post I like on the clusterheadaches.com message board...

deltadarlin

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National Organization for Rare Disorders
Jul 7^th, 2011 at 7:57pm

Here's your chance to be counted. I received this e-mail from NORD

"Help NORD Develop a Rare Disease Day Curriculum for Biology
Students
-----------------------------------------------------------------
NORD is working with a genetic counseling graduate student to
develop a one-to-three day curriculum about rare diseases for
high school biology classes. Your input is requested in the
development of this important program for students. We sincerely
appreciate your time and valuable input.

We hope to educate students about rare disorders, the related
social issues, what it is like to live with a rare disorder, and
ways to become involved in rare disease advocacy. We are planning
to make this curriculum available in the fall for teachers to use
on Rare Disease Day (February 29) 2012. Teachers will be able to
download the curriculum free-of-charge from the NORD website.

To help us better design the curriculum, we are gathering
suggestions from members of the rare disease community through a
short survey that will take approximately 10-15 minutes of your
time. You are invited to participate in the survey, if you are
a/an:* family member or close friend of an individual with a rare
disorder
* staff/volunteer in a patient support organization for a rare
disorder
* medical professional/health provider working with a rare
disorder
* researcher for a rare disorder"

here is the link to the questionnaire.

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Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: National Organization for Rare Disorders Reply #1 - Jul 8^th, 2011 at 8:34am Done! Thanks Carolyn.
Back to top	Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way. ~Bernie S. Siegel IP Logged

Jackie CH.com Moderator CH.com Alumnus Offline Go For It!!! Posts: 5903 Goshen, IN Gender:	Re: National Organization for Rare Disorders Reply #2 - Jul 8^th, 2011 at 9:34am Done here too. Hope every clusterhead, supporter, family member and friend fills it out.
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Linda_Howell

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Re: National Organization for Rare Disorders
Reply #3 - Jul 8^th, 2011 at 10:20am

Quote:

You are invited to participate in the survey, if you are
a/an:* family member or close friend of an individual with a rare
disorder
* staff/volunteer in a patient support organization for a rare
disorder
* medical professional/health provider working with a rare
disorder
* researcher for a rare disorder"

O.K. I may be readfing this criteria wrong, but it looks to me like they asren't really asking for sufferers of a rare disorder here. Only, well...everyone BUT a sufferer.

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Hurt people.....hurt people. Think about it.

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Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: National Organization for Rare Disorders Reply #4 - Jul 8^th, 2011 at 11:48am Linda, are you a supporter as well as a sufferer? You just need to put on your supporter hat to answer the questions. That's what I did.
Back to top	Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way. ~Bernie S. Siegel IP Logged

Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: National Organization for Rare Disorders Reply #5 - Jul 8^th, 2011 at 12:27pm all righty then. Will this one do? Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
Back to top	Hurt people.....hurt people. Think about it. IP Logged

Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: National Organization for Rare Disorders Reply #6 - Jul 8^th, 2011 at 3:25pm Linda_Howell wrote on Jul 8^th, 2011 at 12:27pm: all righty then. Will this one do? bestsmileys.com/hat/1.gif Why yes, yes it will!
Back to top	Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way. ~Bernie S. Siegel IP Logged

deltadarlin

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I love YaBB 1G - SP1!

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Re: National Organization for Rare Disorders
Reply #7 - Jul 8^th, 2011 at 4:25pm

Either way works, but if you look at the first question, it asks *this*,

1. Please tell us about yourself: I am a/an (check all that apply)
Individual with a rare disorder.
Family member or close friend of an individual with a rare disorder.
Staff/volunteer in a patient support organization.
Medical professional/health provider.
Researcher

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Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: National Organization for Rare Disorders Reply #8 - Jul 8^th, 2011 at 8:44pm Done Darlin.. Don
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jon019

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Re: National Organization for Rare Disorders
Reply #9 - Jul 8^th, 2011 at 9:11pm

Thanks Carolyn...what a great initiative.

...and may I take this opportunity to remind the family of the Wingate Pharmacy School patient/student partnership. A remarkable program...run by Prof. Christian Dolder....where patients are paired with a student...for an entire quarter of weekly interaction.
It's an all so rare opportunity to "teach" future health care providers (pharmacists) about our condition. Includes all the items in this survey PLUS!

These "kids" are sponges for information...exceedingly intelligent and committed. Be prepared to be equally committed....this is not a light undertaking. You will be tasked with "explaining" just what clusterville is like, how it affects you, your family, your life. And I'm here to tell ya, you will get WAY more out of it than the students.

Doc Dolder tells me clusterheads are treasured subjects...as we tend to be detailed, open, honest, analytical, intelligent, funny, and FERVENT. Didn't surprise me Roll Eyes

Give it a thought....you won't regret it...

Best,

Jon

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The LARGE print giveth....and the small print taketh away. Tom Waits

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Mike NZ

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Re: National Organization for Rare Disorders
Reply #10 - Jul 9^th, 2011 at 3:38am

jon019 wrote on Jul 8^th, 2011 at 9:11pm:

...and may I take this opportunity to remind the family of the Wingate Pharmacy School patient/student partnership. A remarkable program...run by Prof. Christian Dolder....where patients are paired with a student...for an entire quarter of weekly interaction.

This sounds interesting - where do we find out more?

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: National Organization for Rare Disorders Reply #11 - Jul 9^th, 2011 at 7:36am Dun.
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jon019

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"Ya gotta believe!"

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Gender: male

Re: National Organization for Rare Disorders
Reply #12 - Jul 9^th, 2011 at 12:26pm

Re: Wingate
Reply #6 - Sep 29th, 2009 at 9:31am I am a pharmacist and Assistant Professor at the Wingate University School of Pharmacy, and as mentioned, I will be taking over the ePatient course from Dr. Dolder. Next semester we will be offering our electronic patient program to our doctoral pharmacy students. This program involves pairing up a pharmacy student with a real patient. Students and their patients communicate once weekly over the course of the semester on a variety of healthcare-related topics. We would love to have you share your medical, medicine, and healthcare experiences with one of our doctoral pharmacy students to help them learn from real patients. This will be the seventh year that we have offered the program. We have enjoyed the participation of several clusterheadaches.com members in the past and I am excited to open the invitation to participate this year. Our students have found this course to be extremely useful and helpful to learn about medicine outside of a textbook. As a bonus, students are happy to provide you with drug information. You are only asked to share information that you are comfortable with. We don’t require you to give any identifying information. Only the instructor (me) and a student will have access to your e-mail address. Feel free to check out the authenticity of the school, course and me at Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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. If you are interested in the program or would like more information please contact me at k.brice@wingate.edu.
Sincerely, Kira

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The LARGE print giveth....and the small print taketh away. Tom Waits

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flipperlips CH.com Alumnus Offline Live, Laugh, Love Posts: 935 Mcallen, TX Gender:	Re: National Organization for Rare Disorders Reply #13 - Jul 10^th, 2011 at 1:46pm All done and the other half is filling it out as I type
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BobG CH.com Hall of Famer Offline Posts: 6422 St. George, UT Gender:	Re: National Organization for Rare Disorders Reply #14 - Jul 10^th, 2011 at 2:19pm "we tend to be detailed, open, honest, analytical, intelligent, funny, and FERVENT and quite good looking, except that one guy, you know who I mean.Didn't surprise me Thanks for info ddarlin.
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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: National Organization for Rare Disorders Reply #15 - Jul 11^th, 2011 at 11:08am Done. Potter
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George CH.com Moderator CH.com Alumnus Offline Black-Billed Magpie Posts: 8126 Boise, Idaho USA Gender:	Re: National Organization for Rare Disorders Reply #16 - Jul 11^th, 2011 at 2:03pm Yep. Done. Best, George
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BigMatt CH.com Hall of Famer Offline Live to ride, ride to live. Posts: 1089 Mountain View, CA Gender:	Re: National Organization for Rare Disorders Reply #17 - Jul 11^th, 2011 at 4:05pm Did it to. Matt
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