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Digestive Disease National Coalition
Public Policy Forum

Questions about Advocacy with DDNC and the Public Policy Forum, March 3
& 4, 2002.

Q: What does the DDNC do?

A: DDNC is a group for professional and patient organizations that come
together for the purposes of:

1.  Informing the public and health care community about digestive diseases
and nutrition including research, health care and education programs, costs
and social implications, as well as services available to those suffering
from these diseases.

2.  To participate with the National Digestive Diseases Education and
Information clearinghouse, other government agencies and the private sector
in the National Digestive Disease Education Program.

3.  To heighten the awareness and knowledge of federal and state legislators
and administrators about digestive diseases and nutrition.

4. To represent the interests of member organizations regarding federal
and state legislation and programs that effect research, health care,
training and education in digestive disease and nutrition.

Q: Who is a part of DDNC?

A: Member organizations include such groups as the American Liver
Assoc., Colorectal Cancer Network, and the Crohn's & Colitis Foundation
of America. Gluten Intolerance Group has been a member of DDNC for many
years. A few years ago the Celiac Disease Foundation also joined the
Board. Last year CSA and American Celiac Society also joined - so now
all the national celiac patient support groups are represented.

Q: What has the DDNC done recently?

A: It is partly through the work of the DDNC that so much attention has
been given to colorectal cancer, irritable bowel syndrome (IBS) and
other such conditions.

Q: Do you need people to go to D.C. that weekend?

A: This advocacy work is on a national level. Our primary goal is to
represent DDNC and the need for continued funding for research,
awareness, and education regarding digestive diseases. Our secondary
goal is to briefly share how this funding would help persons with celiac
disease.

We go to Washington DC to meet with our Congressional representatives
and senators as a member of a team representing the DDNC. The teams are
coordinated and the meetings scheduled through the DDNC. The DDNC offers
a briefing meeting and reception on Sunday, March 3rd, starting at 4:00
at the Washington Court Hotel. At this meeting we learn about the focus
and priorities for the forum, as well as what is currently happening in
research.

Monday, March 4th a breakfast is offered and a briefing in preparation
for congressional visits. The teams get back together for lunch and a
guest speaker, then the teams complete the Congressional visits in the
afternoon. GIG helps to arrange GF offerings for these meals.

Q: What do we have to do to get more recognition for celiac disease?

A: We got the attention of the DDNC, NIH and a number of other powerful
groups last year by the shear number of people representing celiac
disease. Being willing to continue to be a visible part of the DDNC
Public Policy forums is very important. Visits are very short - no more
than 10-15 minutes, so the messages must be precise and concise.

But more importantly, we must not only be a team player for the DDNC
(they are our best ally and resource for increased awareness and
research money) but also we must all be saying the same thing and
sharing the same information. The celiac community, including the
national groups, is not currently respected on the Hill because we don't
work together. This should be the one place we can set our differences
aside and "speak with one voice". Until we do this, we will not be taken
seriously.

What else can we do? Simply work together, draw off current research
that will benefit celiac disease awareness (even when the research is
not solely focused on celiac disease), provide information that is
accurate and research based, and speak with one voice.

Q: Who can advocate for celiac disease?

A: Anyone can advocate. Children often make the best advocates, or those
who have suffered from the disease. Even if you have never been an
advocate before, you can do this. It is not difficult. The script is
written for you.

You are the messenger.

Q: What are the national celiac organizations doing to help us work
together for advocacy?

A: The DDNC has asked that all organizations submit the handouts they
want to use during the Public Policy Forum. They will then work with us
to present a unified message. What this means is we will probably only
use something like the Fact Sheet used last year, that lists all the
national organizations, rather than individual organization brochures.
CDF has offered to update the Fact Sheet for this year.

Q: What can I do to help if I can't attend the forum?

A: We have another opportunity to advocate in Washington DC. The Skin
Disease groups and NIAMS advocate on the Hill April 16 &17th. You can
help us then also. GIG is the only celiac organization currently doing
advocacy for persons with DH. We need to have representatives at this
advocacy effort too. We are also offered the opportunity to write
letters asking to testify before Congress. These letters are usually
written in December. Congress will then decide who they are going to
invite with those testimonies and they are generally in the spring each
year.

If you have an interest in participating, please contact Cynthia Kupper
no later than February 22, 2002.


Cynthia Kupper, RD, CD
Executive Director
Gluten Intolerance Group
www.gluten.net or [log in to unmask]
Executive Board Committee - DDNC

Submitted by Nancy
Seattle, WA