National Celiac Disease Patient Advocacy Summit FAQs

Due to limited space for this event, please complete the brief participant application. Participants will be accommodated based upon location of voting residence and a personal statement. Participants (and their family members) will receive an email with the link to register to for the Patient Advocacy Summit. Please allow up to 10 business days for notification.

Space is limited for this event, so we strongly encourage you to do everything you can to make a decision quickly. We ask that you wait to apply until you are sure you can commit to attending. The Celiac Disease Foundation will incur a significant cost for those who register but do not attend the event. We also ask you to keep in mind that registering without attending prevents others from attending the event in your place.

It is important that you apply using the address where you are currently registered to vote. The goal of the Patient Advocacy Summit is to train participants to become effective advocates for celiac disease in meetings with their local Congressional representatives. In order to have the biggest impact on the largest number of representatives, we need advocates from a wide variety of districts.

The registration fee is $15 per person and includes a gluten-free breakfast and lunch. There are no other fees for participating in the Patient Advocacy Summit. Participants are responsible for their travel costs.

A gluten-free breakfast and lunch will be provided at the Patient Advocacy Summit, as well as all participant materials. Participants are responsible for their own airfare, hotel, and ground transportation arrangements.

Yes. When you apply you must indicate who you are bringing, and when you register, you will have the option to select the number of guests you will be bringing and enter their personal information. Children, ages 12 and older, with the maturity to attend are invited. Everyone who is planning to attend must be registered. Accurate attendee information is critical for catering arrangements, seating plans, participant materials, and other accommodations.

Due to space constraints, we are unable to accommodate anyone who is not registered.

Registration for the Patient Advocacy Summit officially closes on January 30, 2020. Registration may close prior to this date due to space constraints. We encourage you to apply, and register, as quickly as possible.

Upon registration, you will receive a confirmation email that outlines information on traveling to and from Washington, DC, as well as information on the Patient Advocacy Summit location. We will also send you emails prior to the Patient Advocacy Summit with tips to make your trip a success. When checking in at the Patient Advocacy Summit on Thursday, February 27, from 9am to 10am, you will receive a participant packet that includes all the materials you will need for the Patient Advocacy Summit.

Welcome! We’re excited to have you at this empowering event. Once you register, and in the weeks leading up to the Patient Advocacy Summit, we will send you emails with useful tips and information to make your experience a success.

Our training and breakout sessions will help prepare you to meet with your members of Congress and/or their staff when you return to your home state, and you also will get the chance to meet other participants from across the country. Children, ages 12 and older, will participate in all training and breakout sessions. There will not be separate activities, or supervision provided. Check-in and a gluten-free breakfast will begin on Thursday, February 27 at 9:00am. Sessions will be from 10:00am to 3:00pm, with a break for a gluten-free lunch.

We are here to help you at any time. Contact our office for any questions or concerns at 818.716.1513, x101.

We ask that you do not contact any Congressional offices in Washington, DC to schedule appointments. We have an advocacy team in place who will meet with members of Congress on Capitol Hill. Patient Advocacy Summit participants will meet with their Congressional representatives in their home states.

However, if you have special connections with individual members of Congress or their staff, please let us know as soon as possible. Please contact our Director of Research and Advocacy at [email protected].

The Patient Advocacy Summit will be held  at the offices of Baker Donelson, 901 K St NW #900, Washington, DC 20001, from 9:00 am to 3:00 pm.

Recommended hotels closest to the Patient Advocacy Summit are the Henley Park Hotel: (202) 638-5200, and the Embassy Suites Convention Center: (202) 739-2001. Both hotels are a three minute walk to the Patient Advocacy Summit.

Washington National Airport (DCA) is six miles from the Patient Advocacy Summit and both of the recommended hotels, the Henley Park Hotel: (202) 638-5200, and the Embassy Suites Convention Center: (202) 739-2001. Washington Dulles International Airport (IAD) is 25 miles away.

The dress code for the Patient Advocacy Summit is business casual. We encourage you to bring layers as the temperature in the conference hall can vary.

Weather in Washington, DC, in February can be very cold – be prepared for rain or snow, and please check the weather to plan. Please note that you will have to go through security screenings to get into the office building. Also, please keep in mind that you will need a photo ID for registration.

We will provide a gluten-free breakfast and lunch at the Patient Advocacy Summit. Please know that while there will be a vegetarian option, allergy and other preferences cannot be accommodated. You are welcome to bring your own food if pre-arranged.

Yes. This training is mandatory for anyone who plans to visit members of Congress in their home state. We will cover critical topics and information that you can use in your meetings, and what we will be asking Congress to do. Please note that the messages we deliver to Congress are different every year.

If you can’t make it to the Patient Advocacy Summit but still want to make a difference for celiac disease advocacy, you can make a donation here.