<<Disclaimer: Verify this information before applying it to your situation.>>

I was asked by the Executive Board of the Digestive Disease National
Coalition (DDNC) to invite members of the celiac community to once again
have the opportunity become patient advocates with the DDNC 2002 Public
Policy Forum in Washington DC, March 3-4, 2002.

Last year the celiac patient advocates had an impact on the DDNC because
of our number of patient representatives. They want to see us bring just
as many people again this year. That is what we did right!

What we did wrong, was not understand the importance of speaking the
same message. There is power in numbers and power in partnering with
other patient groups. The DDNC provides us power by advocating with
other organizations like ours that have similar issues and concerns.
Sending a common message to congress shows credibility and value. If
congress hears one message over and over, they get it. If we go with
personal 'agendas' instead of a united message (even within the celiac
community) we are not respected, often not heard and as a result, do
more damage to our personal cause and that of the DDNC. If you want to
advocate with a personal agenda, it is recommended by professional
health advocates that you do it through personal visits not tied to a
coalition group.

If we are to advocate as part of the DDNC, we must speak their message.
As well, if we are to speak about celiac disease we must all be sending
the same message. The national groups will work together to develop a
common message about celiac disease.

If you are interested in advocacy, please support the Public Policy
Forum. For more information write: [log in to unmask]

Cynthia Kupper, RD, CD
Exec. Director - Gluten Intolerance Group
Executive Board Member - DDNC