Advocacy 2021 TW

 

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Virtual Advocacy Event

MARCH 21-26, 2021

For the millions of Americans living with the debilitating and sometimes life-threatening symptoms of a chronic gastrointestinal (GI) or motility disorder, the fight for awareness, research into safe and effective treatments, and cures are ongoing.

But Members of Congress can help.

IFFGD's Virtual Advocacy Event will be a week long event educating and empowering advocates from across the nation — patients, family members and friends, and healthcare providers. This educational opportunity will provide information on how patients and caregivers can find the support they need. Advocate training will educate viewers on ways to engage with Federal agencies to help shape research and policy decisions; to effectively share personal experiences; and educate key policymakers in Washington about the needs of the millions of Americans affected with GI illness.

Together, we will make the voice of the digestive health community heard and encourage Congress to prioritize actions that will lead to greater awareness and the development of new treatment options and cures.

An online Education Program will be held on Sunday, March 21st. This program will include discussions on how to locate and utilize various forms of support; facebook, online and in person groups, financial and travel.

Monday, March 22nd will begin a week dedicated to advocating Congress. During this week we will have three evening programs highlighting advocacy and support from government agencies. Please refer to the Advocate Training Materials and email This email address is being protected from spambots. You need JavaScript enabled to view it. with any questions or comments.

 

 

About IFFGD's 2021 Virtual Advocacy Event

Whether you are living with a chronic GI condition or you know someone who is, you understand the true impact of these conditions on those affected and the need for greater research funding for treatments and cures. IFFGD's Virtual Advocacy Event provided participants with the opportunity to share this impact with elected officials and advocate virtually with others just like you. Please email This email address is being protected from spambots. You need JavaScript enabled to view it. if you have any questions relating to this event or future advocacy efforts.

Sunday, March 21st, 2021

Finding Help Through Support Groups on Facebook

Many people have a difficult time finding a Facebook support group that best suits their needs. Learn more about what to look for in a Facebook support group to help narrow down your search. You will hear from a few disease specific support groups. Although we do not specifically endorse these groups, they are examples of what a positive and helpful support group can look like. We hope these interviews will highlight the unique benefits of support that can be found on social media.

In-person and Online Support Groups

Now more than ever, it may be hard to locate support groups because in-person meetings are being transitioned to virtual platforms. Learn about organizations who provide both in-person and online support groups for various GI conditions. These interviews take place with leaders of various disease specific support groups. Although we do not specifically endorse these groups, they are examples of what a positive and helpful support group can look like. Each discussion will educate viewers on the organization while highlighting the unique benefits that in-person and online support groups can provide for the community.

Developing a Comprehensive Support System

Building a well-rounded support system is important to ensure the best quality of care for all GI patients. These video discussions will educate viewers on types of support that are not always thought of. Hear from organizations that both provide resources and help to further connect patients to needed resources. For those who need to travel for appointments or scheduled procedures, learn about an organization that helps to offset financial burdens by providing free or discounted air travel. Those who are limited by dietary restriction may benefit from hearing more from an organization that provides gluten free food pantries. While developing a comprehensive support system, you can benefit from learning about an organization that encourages patients to take part in integrative medicine. Also included in this session is more information on the many resources IFFGD has made available to the GI community.

Monday, March 22nd, 2021

Advocacy Education

To start this week of advocacy, learn more about the importance of your advocacy efforts. Those who are new to advocacy as well as those who have years of experience will benefit from this education program. Viewers will learn more about Congress and how it works, how to contact and follow-up with Congress, as well as IFFGD’s legislative priorities for the GI community. The session will end with an opportunity to submit questions and have them answered live.

Tuesday, March 23rd, 2021

Governmental Support

Government agencies provide support in a variety of ways. First, learn about a youth program from the National Institute of Digestive and Kidney Diseases (NIDDK) that seeks to engage minority students who may otherwise have difficulty entering the research field. This program engages students in high school, undergraduate, and at the graduate levels and enables them to become involved in science and research.

Travel can be especially difficult for those impacted by chronic GI conditions. You will also hear from the Transportation Security Administration (TSA) on the support they provide for patients when they travel. This session will help you to learn more about the steps you can take to have the best possible travel experience, especially for those with specialized medical equipment.

It is important for Veterans to be aware of the resources made available to them by the United States Department of Veteran’s Affairs (VA). Viewers will learn about research that is being conducted to better understand the high rate of GI conditions in Veterans and to improve treatment options. Gulf War Illness and other GI conditions that commonly impact Veterans will also be discussed in this session. For those who feel they are impacted by these conditions, information will be provided on what resources are available and how to utilize them.

 

 

Frequently Asked Questions

Where do I go for questions?

  • Email This email address is being protected from spambots. You need JavaScript enabled to view it. before, during, or after the event.

How much does the event cost?

  • This is a free event!

Who can attend IFFGD’s 2021 Virtual Advocacy Event?

  • All are welcome to participate! Many people are impacted by gastrointestinal disorders and we invite everyone to attend.

How do I register for the event?

  • Registration is available here.

Is Sunday’s educational program being recorded?

  • Yes, all talks will be recorded.

Will the resources be available after the event, even without registration?

  • Yes! Educational videos from Sunday’s program will be made available on https://iffgd.org/ after the event. Advocate training materials, including videos and informational packets, will be made available online.

How do I access the virtual event?

  • You will receive a link to the event if you have registered. You can use your laptop, desktop, cell phones, tablets, or other devices as long as you have an internet connection. A link to the educational portion will also be made available on the Virtual Advocacy Event Page.

Will I be visible or heard by others during the event?

  • No, you will be watching the event as a viewer and will be muted at all times. There will be a chat box available for any questions or feedback during the event. As always, please email This email address is being protected from spambots. You need JavaScript enabled to view it. with any questions or comments.

Will my data or internet affect by viewing ability?

  • Poor internet connection or cellular service can affect the quality of your connection to the live-streamed educational event.

What device should I use during the educational program?

  • You can connect using a computer, laptop, tablet, cell phone, or any other device with an internet connection. For the best possible experience, we recommend:
  • For computers – You should be able to connect on any browser. Chrome provides the best quality experience
  • For mobile devices – Download the Vimeo app for the highest quality and to ensure the chat box is available.

How long will the event last?

  • This is a week long event beginning with an educational day on Sunday and an advocacy call-in day week starting Monday. Calling and emailing of Congressional Offices will occur on Monday at the convenience of each participant.

Do I have to be actively participating during the week of the event?

  • No, but we encourage you follow the education programs starting on Sunday if time permits. If you are unable to follow along the videos will be made available afterwards on www.iffgd.org.

Do I have to be contacting Congress at a specific time on Monday, March 22nd or throughout the week?

  • No, you can call and email at your convenience throughout the week. For most Washington D.C. offices, the best time to call is from 10 a.m. to 4 p.m. EST.

How do I locate my legislators if I am not familiar with them?

  • Visit house.gov and senate.gov.

How do I know if my legislator has already supported the legislation?

  • This information can be found on congress.gov

How long should my legislative contacts be?

  • Phone calls to legislative offices should be 20-30 minutes long at most but can be shorter.

What should I be sending to my legislators?

  • The IFFGD Legislative Packet can be downloaded on the Advocate Training Materials page.

Where do I find the documents to send my legislators?

  • Documents will be sent to registrants as a link via email and made available on the Advocacy Training Materials page.

I am having trouble attaching the packet to send to my legislator, what should I do?

  • Email This email address is being protected from spambots. You need JavaScript enabled to view it. and let us know the congressional office and email address you are trying to send it to, we will follow-up with that information for you.

Should I follow-up with my legislator after the advocacy event?

  • Yes, you should follow-up with the office by phone or email within a few weeks of the event. Instructions on how to do so are available in an Advocate Training Video.

Resources

books

We provide a wide range of tools dedicated to providing you with information about chronic disorders of the digestive tract and how you can manage symptoms and improve daily life.

Publication Library

Books of Interest

Medical Definitions