you are cordially invited!

The HAEA is pleased to announce that the 2023 US HAEA National Summit will take place in Orlando, Florida, July 20 - 23, 2023. The Summit theme is Living Beyond Boundaries and will bring the HAEA community together in-person for the first time in four years. Our goal is to once again unite people with HAE, caregivers, healthcare professionals, and industry partners for a transformative experience of learning and sharing.

The Summit will feature a highly relevant and engaging program that includes:

General sessions covering

the latest information on HAE therapies,
treatments on the horizon,
grassroots legislative initiatives,

Youth Health Management and Advocacy Training,
Brady Club Kids Workshops for the very young members of our community,
Professional-Scientific Track.

Historically, HAEA National Summits fulfill our community's enduring desire to learn more about HAE and what they can do to further improve quality of life.

We invite you to participate in and support this important event, and look forward to seeing you in Orlando.

Anthony Castaldo

US HAEA President & CEO

Summit Registration

If you wish to attend the Living Beyond Boundaries - 2023 US HAEA National Summit you must register online by July 3rd, 2023. Summit registrants will arrive from July 19th to July 21st (depending on flight options). Some families will arrive earlier to participate in the youth track that starts on Thursday. Attendees will participate in a half-day session on Friday afternoon followed by an evening Welcome Reception. On Saturday, July 22nd, the half-day morning 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. Saturday afternoon will offer fun activities and free time to connect with friends old and new, with a special dinner and fun entertainment to end the day.

Registration types

INDIVIDUAL
$25

FAMILY
(up to 4 members)
$25

FAMILY PLUS
(5 or more members)
$50

A Summit registration fee is required and includes access to ALL meals, general sessions, and special events at the Living Beyond Boundaries - 2023 US HAEA National 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.

Please Note: No HAE medicines or medical treatment will be available at the 2023 US HAEA National 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.

At this time, registration for the 2023 US HAEA National Summit – Living Beyond Boundaries has officially closed. Summit registration ON SITE will also be closed. If you are a person with HAE or caregiver to one and have questions regarding registration, please contact summit@haea.org or reach an HAE advocate at (877) 839-4232

Corporate & Industry:

If you are interested in becoming a sponsor of Living Beyond Boundaries - 2023 US HAEA National Summit, or to receive information on the sessions and special events, please contact Michelle Cuevas, Senior Executive VP & COO via email at michelle@haea.org.

Summit Information

Conference Grants

The deadline for submitting your grant application was February 28, 2023. If there are grants still available after this date, the HAEA will announce a second drawing. Please complete the grant section below if you would like to be waitlisted for a grant in the second drawing.

Professional - Scientific Track

The CME accredited Professional-Scientific Track will offer informative sessions on the latest research, HAE therapies, and results of the HAEA's pharmaco-economic study that addresses questions about the comparative economic value of prophylaxis versus on-demand therapy, and much more.

Youth and Young Adult Programs

NOTE: We're thrilled to announce that the 2023 Summit Youth Programs have reached registration capacity. All Youth Program registrations made after April 12, 2023, will be added to a waitlist and will be notified if space becomes available via email.

SEE MORE

×
Youth and Young Adult Programs

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 unique tracks. Registration for the Brady Club Programs (ages 5-7 and 8-11), and the two Youth and Young Adult (ages 12-25) Programs is 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 Youth and Young Adult Programs will not be available. Participants must pre-register. Childcare services are NOT available for infants and children younger than 5 years old.

Summer Youth Health Management and Advocacy Program (Ages 12-25): Thursday, July 20 - Friday, July 21

This two-day program is designed to unite the HAEA Youth Community through a series of activities that will focus on health management and advocacy for youth and young adults ages 12-25. The program includes tips, tools, and activities centered on empowering youth to take charge of their health and use their voices to advocate on behalf of important issues, and how they can play a powerful role in creating lasting and meaningful change.

The Summer Youth Health Management and 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 must be between the ages of 12 and 25. *Team projects will be assigned by age groups (2) Diagnosed or have a family member who is diagnosed with HAE. (3) Interested in learning about advocacy. (4) Committed to participating in all sessions of the 2-day workshop. *All youngsters accepted into the Summer Youth Health Management and Advocacy Program are expected to attend all sessions to ensure future program invitations.

*Select participants will be scheduled to arrive on Wednesday, July 19th. Families coming in early to accompany the participant will be responsible for their own meals and activities during the program dates.

Youth Leadership Workshop (Ages 12-25): Friday, July 21 - Saturday, July 22

Participants will experience two-half days dedicated to learning how to raise awareness and problem-solve through team-building activities. Youth will work in groups to develop a campaign that they can carry out in their communities to raise HAE awareness. The following day, youth will work together as they participate in a team-building session that will strengthen their leadership and problem-solving skills.

Brady Club Programs (Brady Cubs: ages 5-7 and Brady Bears: 8-11): Friday, July 21- Saturday, July 22

Two individual programs developed for children ages 5-7 and 8-11 diagnosed with HAE and their siblings. These programs will help the youngest members of the HAEA community to better understand, manage, and cope with their condition while offering fun activities for them to feel inspired, empowered, and connected to other kids!

This program is on-site.

At this time, registration for the 2023 US HAEA National Summit – Living Beyond Boundaries has officially closed. Summit registration ON SITE will also be closed. If you are a person with HAE or caregiver to one and have questions regarding registration, please contact summit@haea.org or reach an HAE advocate at (877) 839-4232

Hotel Accommodations and Information

The conference is being held at the Rosen Shingle Creek® Hotel in Orlando, Florida. In order to ensure your participation at the Living Beyond Boundaries - 2023 US HAEA National 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.
SEE MORE

×
Hotel Accommodations and Information

The conference is being held at the Rosen Shingle Creek® Hotel in Orlando, Florida. In order to ensure your participation at the Living Beyond Boundaries - 2023 US HAEA National 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 US HAEA, and we will send you your confirmation information. Your covered hotel dates will be confirmed by an HAEA representative once flights have been confirmed.

Hotel reservations include the Summit nights of Friday, July 21, and Saturday, July 22. The discounted group rate is $159 per night, plus appropriate state and local taxes, currently at 12.5%. Guest rooms accommodate a maximum of four (4) persons per room.

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

If you would like financial assistance with accommodations, you may apply for a 2023 US HAEA National Summit Conference Grant after completing your registration form.

As a reminder, if you are applying and are approved for a Summit conference grant for travel and hotel accommodations, the HAEA will secure your room directly and you do not need to reserve separately.

If you plan to make your own hotel reservations through the HAEA block at the Rosen Shingle Creek either via phone or by using the link below.
 
To secure your own hotel reservations through the HAEA block at the Rosen Shingle Creek via phone, please call the reservations department directly at 1-866-996-6338 or 1-407-996-6338 and reference the group booking code 83433.

To secure your own hotel reservations through the HAEA block at the Rosen Shingle Creek online, please use the HAEA housing link here.

Hotel Cancellation Policy

Please be sure to carefully read the cancellation policy of the Rosen Shingle Creek® Hotel 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 (877) 839-4232.

Summit Cancellation Policy

If you need to cancel your registration for the Living Beyond Boundaries - 2023 US HAEA National Summit, please notify the HAEA by emailing summit@haea.org, or by calling (877) 839-4232 by June 27th, 2023. After this date, Summit registration fees cannot be refunded.

Ground Transportation

The US HAEA will organize group shuttle transportation for arrival into Orlando International Airport on Thursday, July 20, and Friday, July 21. Departure group shuttle transportation will also be provided on Sunday, July 23, from the hotel back to the airport.

Confirmed shuttle times, location, and details will be provided with your confirmation materials.

General Liability

In consideration of the acceptance of a travel grant for the Living Beyond Boundaries - 2023 US HAEA National Summit, please notify the HAEA by emailing summit@haea.org, or by calling (877) 839-4232 by June 27th, 2023. After this date, Summit registration fees cannot be refunded.

Safety Information

OUR COMMITMENT TO EVENT SAFETY

We understand the growing concerns around the rise of the COVID-19 and its variants throughout the United States. As a 2023 US HAEA National Summit participant, your health and safety are of our top priority. Please read below for more information on how we are planning to conduct a healthy and safe environment for all.

COVID – 19 Health & Safety FAQ's

We continue to follow the CDC guidelines, government and venue ordinances for Orlando, Florida. As of Friday, December 30, the Centers for Disease Control and Prevention expanded its guidelines recommending vaccinated people wear masks indoors in "high transmission" areas, regardless of their vaccination status. They HIGHLY recommend anyone who is not vaccinated to wear a mask indoors at all times.

We will continue to monitor these guidelines closely and provide timely updates accordingly to our attendees, sponsors, exhibitors and speakers.

We will have masks and hand sanitizers on hand at the event for anyone who wishes to use them.

All hotel staff including front desk, banquet staff, and audiovisual personnel will be wearing masks at the event.

While it is highly encouraged, we do not require anyone to receive a vaccination to attend our event.

For more information on how you can get vaccinated in your area prior to our event, please click here.

We will not be conducting temperature screenings upon check-in to the hotel or the event registration.

Attendee safety is our #1 priority and because so,

WE commit to the following:

Following CDC guidelines, government and venue ordinances closely

Allowing for proper social distancing within our event space

Providing masks and hand sanitizer for anyone who wishes to use them

Enhanced cleaning and sanitizing procedures for our event space

You can reach out to the hotel directly for more information about local health and safety requirements Toll Free at (866) 996-9939.