2019 HAEA National Patient Summit
 
You Are Cordially Invited!

The HAEA is pleased to announce the 2019 HAEA National Patient Summit will be held in Atlanta, Georgia, from July 26-28, 2019. The Summit will commemorate the 20-year anniversary of dedicated patients and families joining together to establish a strong and vibrant advocacy community.

The Summit theme for 2019 - Imagine the Possibilities - will frame a program that provides a sense of the past, a realistic assessment of the present, and a positive look to the future. This 20th anniversary HAEA gathering will offer an innovative format and unique programs that further unite the HAE community and guarantees a memorable and empowering experience.

We are also excited to announce that in 2019 the HAEA Summit will include two new programs: (1) a Professional-Scientific Track will offer informative sessions for medical professionals on the latest research, the new US HAEA Medical Advisory Board Treatment Recommendations, HAE therapies, and results of the HAEA's pharmacoeconomic study; and (2) a youth-focused program designed to boost leadership skills, friendships, and mutual support among our younger HAE patients - divided into two tracks to support the specific interests of those ages 5-11 and 12-25.


Please read through the information that follows before registering at the bottom of this page.

Summit Registration

If you wish to attend the Imagine the Possibilities - 2019 HAEA National Patient Summit you must register online by July 3rd, 2019. Summit registrants will arrive on Friday, July 26th and participate in an evening Welcome Reception. On Saturday, July 27th, the Summit sessions will focus on contemporary issues affecting the HAEA community, including the latest information on health, advocacy, engagement, advances in research, and HAE therapies. A special dinner and fun entertainment will end the day. Summit attendees can sign up for the HAE IN-MOTION® 5K walk/run that will take place on Sunday, July 28th.

A Summit registration fee is required and includes access to ALL meals, general sessions, and special events at the Imagine the Possibilities - 2019 HAEA National Patient Summit. Summit attendees must submit payment of the total conference registration fee along with their registration application - payable online via debit/credit card only. Space is limited and is provided on a first-come basis. You can register for the Summit at the bottom of this page.

Registration types:
  • Individual: $25
  • Family (up to 4 members): $40
  • Family Plus (5 or more members): $50
Corporate & Industry:
If you are interested in becoming a sponsor of Imagine the Possibilities - 2019 HAEA National Patient Summit, or if you would like to purchase tickets to attend the sessions and special events, please contact Managing Director Michelle Cuevas via email at michelle@haea.org.


Please Note: No HAE medicines or medical treatment will be available at the 2019 HAEA Summit. Please make sure to travel with sufficient HAE doses/medication - including prophylactic and/or acute therapy to manage any possible attacks. You will need to be able to self-administer your treatment - again, no HAE medicines or medical services will be available on-site. A local hospital Emergency Room will be alerted to possible triage needs for patients attending the summit and any/all emergencies will be directed to that hospital. If you wish to arrange for nursing help or other assistance yourself, please be aware that you do so at your own risk and expense.


Conference Grants

Registration remains open, but the deadline for the 2019 summit conference grant applications has arrived. Grants for the 2019 summit are no longer being awarded. The HAEA will notify grant recipients by Friday, March 15th. If there are grants still available after this date, a second drawing will be announced.


Professional - Scientific Track: Friday, July 26, 2019

The Professional-Scientific Track will offer informative sessions on the latest research, the new US HAEA Medical Advisory Board Treatment Recommendations, HAE therapies, and results of the HAEA's pharmacoeconomic study that addresses questions about the comparative economic value of prophylaxis versus on-demand therapy, and much more.

*Space is limited. If you're a physician and would like to attend or participate in the Professional-Scientific track, please fill out the registration form below. For more information on this track, contact HAEA Patient Advocate,  Anna Chenoweth.



Youth and Young Adult Programs

Thanks to an overwhelming amount of interest, registration for the Youth and Young Adult Programs has reached maximum capacity. If you would like to attend, registration will only add you to a waiting list at this time. You will only be notified if an opening becomes available due to a cancellation.

The HAEA youth and young adult programs are designed to boost leadership skills, friendships, and mutual support among our young HAE patients and will be divided into three unique tracks. Registrations for the Brady Club (ages 5-11), and the two Youth and Young Adult (ages 12-25) programs are free.

If you are interested in having your child participate, or if you are between the ages of 18-25 and would like to participate in the programs, you will need to mark the appropriate box on the online registration and complete the consent forms included. If more than one child in your family will participate in the programs, you must submit a separate registration for each child.

Space is limited, so register your teen or child today!

Please Note: On-site registration for the Summit Youth Programs will not be available. Participants must pre-register. Childcare services will NOT be provided for infants and children younger than 5 years old.

Global Summer Youth Advocacy Program (Ages 12-25): July 25-27

The Global Summer Youth Advocacy Program is a collaborative effort between the US HAEA and HAE International. HAEi is the international umbrella organization for the world's Hereditary Angioedema (HAE) patient groups.

Together, the US HAEA and HAEi have developed a comprehensive advocacy workshop designed to guide young HAEA members through the process of advocating for themselves and the HAE patient community. The workshop will bring young HAE patients from around the world for a two-day immersive learning session that includes lectures, project based activities, and fun group interactions.

The Global Summer Youth Advocacy Program invites dedicated and determined young people, interested in learning advocacy skills, participating in group activities, and working towards a common mission - raising HAE awareness. Educational sessions and lectures will be offered to all participants; however, project activities will be assigned by age groups.

Who is eligible: (1) Participants between the ages of 12 and 25. (Team projects will be assigned by age groups). (2) Youth who are diagnosed, or have a family member who is diagnosed with HAE. (3) Youth interested in learning about advocacy. (4) Youth committed to participating in all sessions of the 2-day workshop.

All youngsters accepted into the Global Summer Youth Advocacy Program are expected to attend all sessions and complete the assigned team projects in order to obtain the Advocacy certification and ensure future program invitations. Select participants will be scheduled to arrive on Wednesday, July 24th. Families coming in early to accompany participants will be responsible for their own meals and activities during the program dates.

This program includes off-site activities.

Youth Social Program (Ages 12-25): Saturday, July 27, 2019

This program is designed to help youth and their siblings impacted by Hereditary Angioedema become successful storytellers and to explore how they can create positive and lasting change within their community.

The program includes an off-site visit to the Atlanta Center for Civil and Human Rights to learn more about how civil rights activists and social change advocates use various media platforms (print, television, music, art, etc.) to communicate their message.

Back on-site, a Storytelling and Media Workshop with learning stations will educate youth on how to share their stories through film, photography, visual art, podcasts, screenwriting, and improvisation. The program will also teach how these creative resources can help them share their stories and serve as a powerful tool for advocacy.

*The general summit Youth Program will require participants to walk for approximately 10 minutes (.5 miles) across the park to the off-site activity at The Center for Civil and Human Rights, and back to the hotel for the Storytelling and Media Workshop.

Brady Club Program (Ages 5-11): Saturday, July 27, 2019

Thanks to an overwhelming amount of interest, registration for the Brady Club Program has reached maximum capacity. If you would like to attend, registration will only add you to a waiting list at this time. You will only be notified if an opening becomes available due to a cancellation.

Developed for children ages 5-11 diagnosed with HAE and their siblings, this program will help the youngest members of the HAEA community better understand, manage, and cope with their disease while offering fun activities that inspire, empower, and connect HAEA kids!

This program is on-site.



Hotel Accommodations and Information

The conference is being held at the Omni Atlanta Hotel at CNN Center. In order to ensure your participation at the Imagine the Possibilities - 2019 HAEA National Patient Summit, you must 1.) register for the general session and events and 2.) make your room reservations prior to (date to be announced). After that date, rooms at the discounted rate may no longer be available.

*If you apply and are approved for a conference grant that includes hotel accommodations, your hotel reservation will be made directly through the HAEA and we will send you your confirmation information.

Hotel reservations include the Summit nights: Friday, July 26th and Saturday, July 27th - at a discounted group room rate of $129 per night, plus 16.9% tax, and a $5.00 state fee per room, per night, for single-quad occupancy. The HAEA will accommodate family members with a maximum capacity of four (4) persons per room for a double-bedded room.

Registration for Family Plus (5 or more members) will be accommodated in multiple rooms.

If you need economic assistance with accommodations, you may apply for an HAEA Summit Conference Grant after completing your registration form.

*If you are not applying for a grant, please click here to make your hotel reservation online.

Omni Atlanta Hotel At CNN Center
100 CNN Center NW
Atlanta, GA 30303
(404)659-0000
https://www.omnihotels.com/hotels/atlanta-cnn-center

If you are not able to reserve online, you may call (404)659-0000 to reserve a room. Request the HAEA National Patient Summit room block for the discounted rate. The Summit discounted hotel room rate is available on a first-come, first-served basis.



Hotel Cancellation Policy

Please be sure to carefully read the cancellation policy of the Omni Atlanta Hotel at CNN Center and follow their policy accordingly. For any additional questions or concerns regarding hotel reservations, please contact the US HAEA by emailing summit@haea.org or by calling (866) 798-5598.


Summit Cancellation Policy

If you need to cancel your registration for the Imagine the Possibilities - 2019 HAEA National Patient Summit, please notify the HAEA by emailing summit@haea.org, or by calling (866) 798-5598 by June 27th, 2019. After this date, Summit registration fees cannot be refunded.


Ground Transportation

The MARTA train system will be utilized as the main form of transportation for the conference. MARTA trains are conveniently connected to the Atlanta Hartsfield-Jackson International Airport next to Baggage Claim. Trains depart frequently and deliver visitors to downtown Atlanta in only 15 minutes, and serves all of Atlanta's conventions, sports, concerts and tourist destinations. Shuttle transportation will be organized for the main arrival days and departure day from the Civic Center Station stop to the Omni CNN Center Hotel. We will provide more detailed information on the MARTA trains and shuttle transportation information as we get closer to the conference dates.

Fares:
One-way trips cost $2.50 on a Breeze Card that can be purchased with credit, debit or cash from a vending machine in any station. Unlimited ride day passes are also available.

MARTA Schedule
Trains: Weekdays 5:00 AM to 1:30 AM; Weekends/Holidays 6:00 AM to 1:30 AM
Buses: Weekdays 5:00 AM to 1:30 AM; Weekends/Holidays 5:00 AM to 12:30 AM

Mobile App:
Download the free "MARTA On The Go" app with real-time and scheduled train and bus information for iOS and Android.



 

All names entered for registration must be precisely as they appear on your photo ID. Individuals not traveling with your party must complete a separate registration