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Annual Alpha-1 National Conference

The Alpha-1 National Conference is the largest annual gathering of Alphas, their families, leading healthcare professionals and industry in the world. It is a three day event with educational programs given by national experts and leaders in the Alpha-1 field. The conference provides attendees and exhibitors the opportunity to network and increase their understanding of Alpha-1 and COPD.

The Alpha-1 National Conference provides a unique opportunity to meet patients diagnosed with Alpha-1, their families, industry, and healthcare professionals such as respiratory therapists, nurse practitioners, physicians and nurses.

View the Conference Flyer.

Stay tuned as more information becomes available about the 28th Annual Alpha-1 National Conference.

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Information

Conference Venueplus

The 28th Annual Alpha-1 National Conference will take place at the beautiful:

Omni Orlando Resort at ChampionsGate

1500 Masters Boulevard
ChampionsGate, FL 33896
1-888-444-OMNI
Hotel Website

To reserve your hotel room with the conference discounted rate, please scroll down to Accommodations.


Venue Highlights

  • Non-smoking luxury hotel
  • 36 holes of championship golf
  • European-style Mokara spa
  • Orlando's only resort wave pool
  • 18-hole miniature golf and lighted 9-hole par 3
  • Formal pool with private cabanas
  • Zero-entry family pool with a 125-foot corkscrew water slide and water tower
  • 850-foot lazy river with shooting water cannons, arched waterspouts and a waterfall
  • Multiple dining outlets
  • Complimentary scheduled shuttle transportation provided to the Walt Disney World® Theme Parks (24-hour advance reservations are required; please see concierge)
  • Sports Training Complex for soccer and lacrosse
  • WiFi Internet service

Conference-at-a-Glanceplus

Thursday, June 20th
  Early Conference Registration
3:00 - 8:00 pm CSL Behring's 12th Walk for Breath Celebration
Friday, June 21st
  Conference Registration
  Breakfast Sponsored by Takeda
  Conference Orientation

Scientific Sessions: The Path to Finding a Cure

  Alpha-1 Lung 101
  Alpha-1 Liver 101
  Luncheon Sponsored by Grifols with guest speaker
  Meet the Experts
  Building Friends for a Cure Training
  Alpha-1 Lung 101 [repeat session]
  Alpha-1 Liver 101 [repeat session]
  Friday Evening Dinner Reception
Saturday, June 22nd
  Breakfast
  Keynote
  General Sessions
  Research Panel
  Meet the Speakers and Lunch
  Afternoon Breakout Sessions - 4 Tracks
  Dinner and Awards Ceremony
Sunday, June 23rd
  Breakfast
  Memorial Service

 

Program

Pre-Conference Eventsplus

Thursday, June 20th

CSL Behring's 12th Walk for Breath Celebration

Location: Ports of Call, Orlando, Florida

Time: 4:30 to 8:30 pm

Registration: Registration for the event will take place at the Omni Orlando Main Lobby hallway between 3PM -4PM

As space is limited, patients and caregivers who would like to participate are encouraged to come to the walk registration early to secure their spot. Due to state and federal laws, CSL Behring is unable to permit Healthcare Professionals to attend this event.


Friday, June 21st

Breakfast sponsored by Takeda

More information coming soon.


Luncheon sponsored by Grifols

More information coming soon.

Conference Agendaplus

Click here to download a PDF of the National Conference Agenda.

Thursday, June 20th
1:00 - 4:00 pm Early Conference Registration
3:00 - 8:00 pm CSL Behring's 12th Walk for Breath Celebration
Friday, June 21st
8:00 - 10:00 am Breakfast Sponsored by Takeda
9:00 - 5:00 pm Conference Registration
  Conference Sessions The Path to Finding a Cure - Open Scientific Sessions
10:00 - 10:30 am

Conference Orientation for First Time Attendees

Cathey Horsak Henderson, Director of Community Programs, Alpha-1 Foundation

9:30 - 9:50 am

Alpha-1 Antitrypsin Deficiency - the Disease and its Detection
Mark Brantly, MD

9:50 - 10:10 am

Alpha-1 Foundation Research Programs
Adam Wanner, MD

10:10 - 10:30 am

The Foundation's Venture Philanthropy Activities
Jean-Marc Quach

10:30 - 10:45 am

BREAK

10:45 - 12:00 pm

Emerging Therapies for Lung and Liver Disease
Moderator: Igor Gonda, PhD

12:00 - 12:50 pm

Obstacles to Finding a Cure
Jeanine D'Armiento, MD, PhD

10:45 - 11:30 am

Alpha-1 Antitrypsin Deficiency 101 Lung

Monica Goldklang, MD, Assistant Professor of Medicine, Columbia University

11:45 - 12:30 pm

Alpha-1 Antitrypsin Deficiency 101 Liver

Jeffrey Teckman, MD, Professor of Pediatrics and Biochemistry Molecular Biology; Director of Pediatric Gastroenterology and Hepatology, St. Louis University School of Medicine; Cardinal Glennon Children's Medical Center

1:00 - 2:00 pm Luncheon sponsored by Grifols with guest speaker (TBD)
2:15 - 3:45 pm

Building Friends for a Cure Training

Angela McBride, Director of Corporate Relations and Community Engagement, Alpha-1 Foundation
Linda Rodriguez, Director of Development, Alpha-1 Foundation

2:00 - 5:30 pm

Meet the Experts

Registration Available for questions with Clinical Resource Center doctors.

4:00 - 4:30 pm

Alpha-1 101 Lung

Michael Campos, MD, University of Miami

4:35 - 5:05 pm

Alpha-1 101 Liver

Virginia Clark, MD, Associate Professor of Medicine, Division of Gastroenterology, Hepatology, and Nutrition, University of Florida

6:30 - 9:30 pm Friday Evening Dinner Reception
Saturday, June 22nd
7:30 - 8:15 am Breakfast
7:30 - 5:00 pm Exhibit Hall Hours
8:30 - 9:15 am

Opening Remarks & Alpha-1 Foundation Address

Miriam O'Day, President and CEO, Alpha-1 Foundation

9:15 - 10:00 am

Keynote: The Alpha of Tomorrow

Jeanine D’Armiento, MD, PhD, Chair, Alpha-1 Foundation Board of Directors; Associate Professor of Medicine in Anesthesiology; Director, Center for Molecular Pulmonary Disease in Anesthesiology and Physiology and Cellular Biophysics; Director, Center for LAM and Rare Lung Disease

10:00 - 10:15 am BREAK
10:15 - 11:15 am

Research Panel

Moderated by: Jeanine D'Armiento, MD, PhD
Mark Brantly, MD
Virginia Clark, MD
Robert A. Sandhaus, MD, PhD, FCCP
Adam Wanner, MD

11:15 - 12:00 pm Presenting Sponsor Presentations: CSL Behring, Grifols, Takeda
12:00 - 1:00 pm Meet the Speakers
1:00 - 2:00 pm Lunch & Exhibits
2:00 - 4:00 pm

Alpha-1 Antitrypsin Deficiency and Augmentation Therapy

AlphaNet is pleased to offer a free educational program for nurses, presented by Teresa Kitchen, RN, BSN, Clinical Nurse Manager. Three (3) CEU credits will be offered for nurses participating in this program.

 
Saturday Afternoon Tracks
  Track 1 Track 2 Track 3 Track 4

2:00 - 2:40 pm

All the Different Alleles

Mark Brantly, MD, Vice Chair of Research Department of Medicine Chief, Division of Pulmonary, Critical Care and Sleep Medicine Professor of Medicine, Molecular Genetics and Microbiology Alpha One Foundation Research Professor University of Florida College of Medicine

AlphaNet's Step Forward Study: What We've Learned Thanks to You

Robert A. “Sandy” Sandhaus, MD, Professor of Medicine, National Jewish Health, Denver, CO; Medical Director, Alpha-1 Foundation, AlphaNet, AlphaNet Canada

Options to Consider when Selecting Health Insurance

Geralyn D. Molinari, Alpha-1 Volunteer

Genetics & the Importance of Family Testing

Charlie Strange, MD, Professor of Pulmonary Medicine, Medical University of South Carolina; Medical Director, AlphaNet

2:45 - 3:25 pm

Other Disease that are Concurrent (Associated) with Alpha-1

Michael Campos, MD

Lessons Learned from COPDGene

James Michael Wells, MD, MSPH, Associate Professor, Division of Pulmonary, Allergy, and Critical Care Medicine, University of Alabama at Birmingham

Testing & Detection Participating in Clinical Trials

Mark Brantly, MD, Vice Chair of Research Department of Medicine Chief, Division of Pulmonary, Critical Care and Sleep Medicine Professor of Medicine, Molecular Genetics and Microbiology Alpha One Foundation Research Professor University of Florida College of Medicine

Alpha-1 Pediatric Liver Disease

Jeffrey Teckman, MD, Professor of Pediatrics and Biochemistry Molecular Biology; Director of Pediatric Gastroenterology and Hepatology, St. Louis University School of Medicine; Cardinal Glennon Children’s Medical Center

3:25 - 3:45 pm BREAK
3:45  - 4:25 pm

Transplantation

Andres Pelaez, MD, Medical Director, Lung Transplant Program, Co-Director, Adult Respiratory ECMO Program; Associate Professor of Medicine

Tiago Machuca, MD, PhD, Assistant Professor of Surgery, University of Florida College of Medicine

Fundamentals of Epigenetics in Alpha-1 Antitrypsin Deficiency

George Marek, MD, PhD, Medical Resident, University of Florida Department of Medicine

3:45 - 4:25 PM

Obstacles to Care: How to Successfully Navigate the Appeals Process

Robert A. Sandhaus, MD, PhD, FCCP

The Joys & Challenges of Parenting and Alpha-1 Child

Parent Panel

4:30 - 5:10 pm

The Alpha of Tomorrow: Using Modern Technology to Improve Quality of Life

Mark Lightowler, Founder & CEO, The Phorix Group

Liver Disease and Alpha-1: Current State and Future Therapies

Virginia Clark, MD, Associate Professor of Medicine, Division of Gastroenterology, Hepatology, and Nutrition, University of Florida

4:30 - 4:50 PM

Obstacles to Care: A Case Study

Teresa A. Kitchen, BSN, RN, Clinical Nurse Manager, AlphaNet


4:50 - 5:10 PM

Obstacles to Care: Questions & Answers

Moderator: Miriam O'Day

The Joys and Challenges of Being an Alpha-1 Caregiver

Mark Gibbons, President & CEO, RetireSafe

7:00 - 9:00 pm Dinner and Awards Presentations
Sunday, June 23rd
7:30 - 9:30 am Breakfast
8:30 - 9:30 am Memorial Service

Speakersplus

Mark Brantly, MD, Vice Chair of Research, Department of Medicine; Chief, Division of Pulmonary, Critical Care and Sleep Medicine; Molecular Genetics and Microbiology, Alpha-1 Foundation Research Professor, University of Florida College of Medicine

Michael Campos, MD, University of Miami

Virginia Clark, MD, Associate Professor of Medicine, Division of Gastroenterology, Hepatology, and Nutrition, University of Florida

Jeanine D'Armiento, MD, PhD, Chair, Alpha-1 Foundation Board of Directors; Associate Professor of Medicine in Anesthesiology; Director, Center for Molecular Pulmonary Disease in Anesthesiology and Physiology and Cellular Biophysics; Director, Center for LAM and Rare Lung Disease

Mark Gibbons, President and CEO, RetireSafe

Monica Goldklang, MD, Assistant Professor of Medicine, Columbia University

Igor Gonda, PhD, Founder, Respidex LLC

Mark Lightowler, Founder & CEO, The Phorix Group

Miriam O'Day, President & CEO, Alpha-1 Foundation

Robert A. Sandhaus, MD, PhD, Professor of Medicine, National Jewish Health, Denver, CO; Medical Director, Alpha-1 Foundation, AlphaNet, AlphaNet Canada

Charlie Strange, MD, Professor of Pulmonary Medicine, Medical University of South Carolina; Medical Director, AlphaNet

Jeffrey Teckman, MD, Professor of Pediatrics and Biochemistry Molecular Biology; Director of Pediatric Gastroenterology and Hepatology, St. Louis University School of Medicine; Cardinal Glennon Children's Medical Center

Tiago Machuca, MD, PhD, Assistant Professor of Surgery, University of Florida College of Medicine

COMING SOON!

George Marek, MD, PhD, Medical Resident, University of Florida Department of Medicine

Geralyn Molinari, Director, Managed Provider Relations Unit, Office of Managed Health Care, Division of Medical Assistance and Health Services, Department of Human Services

Andres Pelaez, MD, Lung Transplant Program Co-Director, Adult Respiratory ECMO Program; Associate Professor of Medicine, University of Florida

Jean-Marc Quach, President & CEO, The Alpha-1 Project (TAP)

James Michael Wells, MD, MSPH, Associate Professor, Division of Pulmonary, Allergy, and Critical Care Medicine, University of Alabama at Birmingham

Session Descriptionsplus

The Alpha-1 Foundation and the National Conference Planning Committee are currently working with the conference speakers to determine the session descriptions. Please check back soon.

Friday, June 21st

Alpha-1 Antitrypsin Deficiency – the Disease and its Detection

This session will give an overview of the state of our knowledge about Alpha-1. Dr. Brantly will discuss what we know, what we don’t know, and give a brief overview of the types of Alpha-1 detection that are currently available.

Alpha-1 Foundation Research Programs This session will discuss the Alpha-1 Foundation's nearly 25 year investment in research, give perspective to understand the Foundation's contribution to translational research, and outline the current and future changes to the alpha-1 research registry and biomarkers consortium.
Conference Orientation for First Time Attendees

This session will provide an overview of the program for the 28th Annual Alpha-1 National Conference and opportunities to get involved in the Alpha-1 Community.

The Foundation's Venture Philanthropy

This session will describe how the Alpha-1 Foundation has had a seat at the table and stimulated therapeutic development through venture philanthropy activities.

Alpha-1 Antitrypsin Deficiency 101 - Lung The session will discuss what every patient should know about how Alpha-1 Antitrypsin Deficiency affects the lungs.
Emerging Therapies for Lung and Liver Disease

This session includes presentations discussing the latest developments in Alpha-1 research.

Alpha-1 Antitrypsin Deficiency 101 - Liver This session is an introductory and patient-oriented talk about the normal functions of the liver and the basics of Alpha-1 liver disease.
Obstacles to Finding a Cure Dr. D'Armiento will be joined by a panel of experts to discuss the obstacles involved in treating Alpha-1 and the next steps on the path to finding a cure.
Building Friends for a Cure Training Looking for some FUN? Then this is the session for you! Learn to put the FUN in fundraising and how the Alpha-1 Foundation's Building Friends for a Cure program will make it easy and help you every step of the way! Whether you want to host a small party, organzing a walk, play a few games, or have an auction...we will show you how. Get ready to unlock your fundraising potential at this fun-filled, interactive session with prizes and giveaways. Hope to see you there!
Alpha-1 Antitrypsin Deficiency 101 - Lung

This session is an introductory and patient-oriented talk abou tthe normal functions of the alpha-1 protein in the lungs and will discuss what happens when there is a severe deficiency.

Alpha-1 Antitrypsin Deficiency 101 - Liver This session is an introductory and patient-oriented talk about the normal functions of the liver and the basics of Alpha-1 liver disease.

Accommodations and Travel

Accommodationsplus

The Alpha-1 Foundation has secured a number of discounted hotel rooms at the Omni Orlando Resort at ChampionsGate for conference participants. Reservations are assigned on a first-come, first-served basis. As the hotel fills up very quickly, we strongly recommend that you complete your hotel reservation as soon as you register to attend the conference. Please be sure to do so within the Alpha-1 Foundation National Conference Room Block.

National Conference Room Block Details

Discounted Rate - $149 plus tax

Discounted Rate Deadline - Tuesday, May 28th, 2019

Resort Service Charge

Through the National Conference Room Block, the current $30 per room Resort Service Charge has been waived. Conference participants will receive all the amenities that the Resort Service Charge includes.

Rate Availability

The discounted rate ($149 plus tax) is available to conference participants three (3) days pre and post the official dates of the program, based on availability.


Reservation Instructions

To reserve your hotel room online, CLICK HERE to be directed to the unique web link for the Alpha 1 Foundation National Conference Block

To reserve your hotel room via phone, refer to group Alpha-1 Foundation National Conference when calling 1-800-THE-OMNI to make your reservations.


Arrival/Departure Details

Check-in Time - 4:00 pm

Check-out Time - 11:00 am

Guests arriving before 4:00 pm will be accommodated as rooms become available. Guest Service staff can arrange to check baggage for those arriving early when rooms are unavailable and for guests attending functions on their departure day.


Resort Amenities for Conference Participants

  • Complimentary high-speed wireless internet in guestrooms
  • Two (2) bottles of water per room
  • Complimentary use of the Health Club/Fitness Center during normal business hours
  • Transportation to the Disney theme parks (24-hour advanced reservations required)
  • Newspaper available Monday - Friday
  • In-room coffee
  • Evening turndown service available upon individual guest request
  • Use of recreation activities including the lazy river, resort pools, basketball and tennis courts

Airportplus

Orlando International Airport (MCO)

Airport Address: 1 Jeff Fuqua Blvd, Orlando, FL 32827

The Omni Orlando Resort at ChampionsGate is located just 25 minutes from Orlando International Airport.

Shuttleplus

A conference shuttle will be available to and from Orlando International Airport on the peak travel days for the Alpha-1 National Conference. A schedule is currently being organized for the shuttle. Please be sure to include your travel information in your registration if you plan to use the conference shuttle.

Shuttle Instructions:

  • Prearranged ground transportation will be provided upon arrival in Orlando, FL. When exiting the plane, please take the monorail from Airside to Landside on Level 3 of the airport.
  • Follow signs for your airline terminal (A or B) and proceed to the baggage claim area, located on Level 2 (even if you do not have checked luggage).
  • The greeters/chauffeur will be holding a sign displaying 'Alpha-1 National Conference' and standing at the bottom of the escalators nearest your baggage carousel.
  • Once you've made contact with your greeter or chauffeur, he/she will escort you to the waiting area for your shuttle that will take you to the Omni Orlando Resort at ChampionsGate (exact shuttle schedule will be determined soon).
  • Please call Destination MCO if (1) your airline or flight number has changed or (2) you cannot locate your meet & greet staff person or vehicle driver,
  • The travel time from the Orlando International Airport to the hotel is approximately 30-40 minutes. 

 

Shuttle Schedule:

Destination MCO is providing shuttle service from Orlando International Airport to the Omni Hotel & Resorts, ChampionsGate, Florida. 

The shuttle service scheduled was created from your submissions of travel times:

  • Wednesday, June 19th - Every hour from 10 AM – 9 PM
  • Thursday, June 20th - Every hour from 8:30 AM – 5:30 PM
  • Friday, June 21st at the following times:  9:30 AM; 11:30 AM; 1:30 PM; 4:00 PM; 6:00 PM

When you arrive at the airport, proceed to the Baggage Claim area to claim your baggage. If are arriving in Terminal A, meet the staff greeter at the seating area near Southwest baggage claim and if you are arriving in Terminal B, meet the staff greeter at the seating area near Delta baggage claim. Staff greeters will be wearing white or purple shirts and will be holding the Alpha 1 signage. Please note that while the staff person is walking to the bus with arriving attendees, there will be no one in the meeting locations. If you get lost or unsure where to go in the airport, you may call Destination MCO  at 407.422-2522 for help in directing you to the greeter at the airport.  

The shuttles will pick up attendees at Terminal A first and then about 15 minutes later at Terminal B, based on the times listed above

Departure times from the Omni to the Orlando International Airport:

  • Sunday, June 23rd at the following times:  4:00 AM; 5:30 AM; 6:45AM; 7:30 AM; 8:30 AM; 9:30AM; 11:00 AM;  12:15PM; 1:45 PM; 3:30 PM; 4:30 PM
  • Monday, June 24th at the following times: 4:00 AM; 5:00 AM; 6:30 AM; 8:00 AM; 9:00 AM; 11:00 AM; 1:00 PM; 2:30 PM; 3:30 PM; 4:30 PM

We have tried to accommodate as many attendees as possible with the shuttle service.  If you arrival or departure times fall outside these parameters, you are responsible for arranging your own transportation via taxi or other services.

Conference Parkingplus

Self-parking at the hotel/venue will be available for a discounted rate of $10 per day. Valet parking is available for $21 per day, or overnight for $28 plus tax. Complimentary self-parking is available for handicapped attendees. If you require handicap parking, please contact Kim Caraballo at kcaraballo@alpha1.org

 

Explore - Orlandoplus

The Omni Orlando Resort at ChampionsGate offers secluded luxury, yet easy access to area attractions like Walt Disney World, Universal Studios and SeaWorld. Complimentary scheduled shuttle transportation is provided to the Walt Disney World® Theme Parks. (24-hour advance reservations are required – please see the concierge.) The resort is located just 25 minutes from the Orlando International Airport and 20 minutes from Universal Studios and SeaWorld.

Experience Kissimmee - Experience Kissimmee has put together a handy guide, complete with travel tips and helpful advice for you to consider when making your visit to the Kissimmee and Orlando area.

Visit Orlando -  Start planning your dream vacation to Orlando! Find theme parks from Walt Disney World® Resort and Universal Orlando Resort™ to SeaWorld® Orlando and LEGOLAND® Florida Resort. Discover attractions you can’t experience anywhere else. Explore countless other things to do while you’re in town, and get trusted, complimentary trip-planning advice before and after your arrival. You can also purchase discount attractions tickets, book a hotel, search for Orlando events and find discounts with Visit Orlando Deals. Get ready for the time of your life in Orlando!

Sponsorship and Exhibits

We would like to thank our generous conference sponsors and exhibitors. Without their support, this event would not be possible.

Conference Sponsorsplus

PLATINUM
AlphaNet CSL Behring Grifols Takeda
GOLD
Eversana
SILVER
Accredo Coram Diplomat Specialty Infusion Group
SCIENTIFIC SESSION

Apic Bio

Arrowhead

Beam Mereo Vertex
SPONSOR
Kamada

 

Exhibit Hallplus

The Alpha-1 National Conference Exhibit Hall provides conference participants the opportunity to meet directly with exhibitors and learn about their products and services. It is the central conference location for networking; where valuable connections and friendships can be made.

  • Access & Reimbursement
  • Accredo
  • Advanced Aeromedical
  • Alpha-1 Foundation
  • AlphaNet
  • CSL Behring
  • Coram
  • Diplomat
  • Eversana
  • Grifols
  • Marketplace
  • REACH
  • Takeda
  • University of Florida
  • Vertex

Exhibit Hall Hours

Friday, June 21st
2:00 PM - 6:00 PM

Saturday, June 22nd
7:30 AM - 5:00 PM

Interested in Sponsorship and/or Exhibiting?plus

What is the Alpha-1 National Conference?

The Alpha-1 National Conference is the largest annual gathering of Alphas, their families, leading healthcare professionals and industry in the world. It is a three day event with educational programs given by national experts and leaders in the Alpha-1 field. The conference provides attendees and exhibitors the opportunity to network and increase their understanding of Alpha-1 and COPD.

Who are the attendees?

The Alpha-1 National Conference provides a unique opportunity to meet patients diagnosed with Alpha-1/COPD, their families, industry, and healthcare professionals such as respiratory therapists, nurse practitioners, physicians and nurses. Attendees include Alpha-1 patients and their families who are looking for information and services on a wide range of topics such as medical updates, current research and support issues, as well as information and products to improve their health and enhance their lives.

Why exhibit at the Alpha-1 National Conference?

  • Show your commitment to education, research and support for individuals affected by Alpha-1/COPD.
  • Dedicated exhibit time, providing face to face interaction with more than 500 individuals affected by Alpha-1/COPD and their families with the ability to promote your brand and introduce your products and/or services.
  • Ample opportunity for networking (refreshments and light fare included) through breaks and meals.
  • Access to the latest education sessions with leaders in the Alpha-1 field.

If you are interested in joining our Alpha-1 National Conference as a sponsor and/or exhibitor, please contact:

Alexis Artiles Ojeda
Director of Marketing and Events
aartiles@alpha1.org

Please note: All persons who are employed by an industry company must register to attend as an exhibitor even if they will not be participating in the exhibit booth, including MSLs and healthcare providers.

Things to Know and FAQs

General Participationplus

Dress Code

Dress is casual for the meetings, sessions and dinners. You may want to bring a sweater or light jacket, as the meeting rooms in the hotel may be cool.

Name Badges

All conference attendees must wear the official National Conference name badge at all times in order to enter the exhibit hall and attend sessions and meals. Anyone not wearing an official conference name badge may be asked to leave the conference area. Supplementing badges with business cards or altering, adding to or defacing the official conference badge is not permitted. Company badges may also be worn, but will not be accepted as a replacement of the official conference badges.

Cell Phones and Electronic Devices

We ask that you please silence your cell phones and other electronic communication devices during the general and breakout sessions.

Participate in Research

Representatives of Alpha-1 research studies will be attending the conference and exhibiting to enroll those individuals interested in participating in Alpha-1 research.

Photography/Video/Audio Release

The Alpha-1 Foundation has official photographers and videographers at this event. Photos, videos, and audio taken may be used in the future by A1F in marketing, advertising, and publications. By registering for this event, you automatically agree to allow the A1F the possible use of your likeness - in all media formats worldwide. The 28th Annual Alpha-1 National Conference is held in a public space and, therefore, we cannot prohibit participants, exhibitors, sponsors, or news organizations from photographing or video-taping. Thus, you also agree to hold the Alpha-1 Foundation harmless if photos, video and audio are used that include your likeness on social media and/or future marketing materials.

Registration Hoursplus

The conference registration desk will be open the following hours for attendees, exhibitors and industry:

Thursday, June 20th
1:00 PM - 4:00 PM

Friday, June 21st
8:00 AM - 5:00 PM

Saturday, June 22nd
7:30 AM - 2:00 PM

Online Viewing and Participationplus

All the conference sessions on Saturday will be available to view from any location on a laptop, cell phone, tablet or television as long as you have an internet connection. Links to these live videos will be distributed by email and Facebook when the conference begins.

Be sure to join our Facebook event to keep up-to-date on the latest!

Please note: continuous internet access is required to watch the conference online.

Kids and Teensplus

There will be a Meet & Greet on Friday, June 21st in the Royal Melbourne room from 5 PM - 6 PM for anyone utilizing the Alpha-1 Kids or Teen Room. Parents must sign a release form and show proper ID.

Kids’ Activities
The Alpha-1 Kids program will be sponsoring activities for children attending the conference on Saturday, June 22nd. The Alpha-1 Kids room hours will be from 7:45 AM - 12:00 PM and from 1:45 PM - 5:15 PM. The room will be closed from 12:00 PM - 1:30 PM for lunch. We invite children up to 12 years of age to participate. Volunteers are staffing the Kids Room. A volunteer art teacher will assist the children with an art project on Saturday morning. 

Teen Room
The Alpha-1 Foundation is providing a Teen Room on Saturday, June 22nd as a gathering place for teens attending the conference. No adult supervision will be provided.

Nursesplus

Free Educational Program for Nurses

AlphaNet is pleased to offer a free educational program for nurses. Three (3) CEU credits will be offered for nurses participating in this program. For more information about this program and to register, contact Teresa A. Kitchen, BSN, RN, Clinical Nurse Manager at (888) 553-0093.

Oxygenplus

Emergency Oxygen

The conference will not be able to provide EMERGENCY SUPPLIES OF LIQUID OXYGEN this year. If you require liquid oxygen, you MUST bring adequate supplies.

Please bring a current prescription for oxygen in the event you require other forms of emergency oxygen supplies.

Oxygen Travel Fund 

The Oxygen Travel Fund provides oxygen and equipment for Alphas in financial need to travel to Alpha-1 educational events. To apply, please call (877) 228-7321 ext 251 or email jcollins@alpha1.org with at least 30 days notice.

Cancellation Policyplus

Participants unable to attend the 28th Annual National Education Conference will receive a refund equivalent to 100% of their paid registration fee, provided that the Alpha-1 Foundation registration department is advised of the cancellation in writing prior to Thursday, June 20th, 2019.

All cancellation requests must be submitted via email or fax to kcaraballo@alpha1.org by June 20th, 2019 to receive a full refund.

Registration or Cancellation Questions?
Kim Caraballo, Community Outreach Coordinator
(877) 228-7321, Ext. 323
Fax: (305) 503-4629
kcaraballo@alpha1.org

FAQs - Frequently Asked Questionsplus

I noted a special dietary request on my registration. How do I let the hotel know?

Participants who have made a special dietary request will have it noted on their name badge in the bottom right hand corner with the following letters: VN = vegan; G = gluten free; VEG = vegetarian. Please make sure to let your server know that you need a special meal and show them your name badge.

I am industry and/or an exhibitor. Where do I pick up my registration materials?

Exhibitors and members of industry should pick up their registration materials at the conference registration desk labeled during normal onsite conference registration hours.

I’m planning to go on the CSL Walk. Where do I go?

The Walk for Breath is open to patients and caregivers attending the conference. There will be open registration onsite. We encourage everyone to come to registration early to secure their spot. You must register to attend the walk directly with CSL Behring on Thursday, June 20th. Due to state and federal laws, CSL Behring is unable to permit healthcare professionals to attend this event.

I am a first-time conference attendee. What should I attend?

Be sure to attend:

  • The Conference Orientation on Friday, June 21st where the speaker will give a detailed overview of the conference and agenda.
  • The Alpha-1 101 sessions on Friday will provide introductory patient-oriented talks about Alpha-1 in the lungs and liver.

Have a question not answered above? Contact us.

General Questions:
Maddie Requejado, Marketing & Events Coordinator
(877) 228-7321, Ext. 327
mrequejado@alpha1.org

Registration:
Kim Caraballo, Community Outreach Coordinator
(877) 228-7321, Ext. 323
Fax: (305) 503-4629
kcaraballo@alpha1.org

Sponsorship and Exhibit Opportunities:
Alexis E Artiles, Director of Marketing and Events
(877) 228-7321 ext. 331
aartiles@alpha1.org

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Past Alpha-1 National Conference Highlights

2018 National Education Conference Highlightsplus

The 27th National Education Conference opens with a panel on the latest Alpha-1 findings

The 27th Annual National Education Conference will be streaming online

Margaret Anderson will deliver keynote speech at the Alpha-1 Annual National Education Conference in San Francisco

View the 2018 conference agenda as a pdf.

All of the 2018 conference presentations will be available to view online at your convenience by August 24th.

The Alpha-1 Foundation would like to thank all of the sponsors for participating in this year's conference.

Thank you to our 2018 Platinum Sponsors:

  • AlphaNet
  • CSL Behring
  • Grifols
  • Shire

Thank you to our 2018 Gold Sponsor:

  • Dohmen Life Science Services

Thank you to our 2018 Silver Sponsors:

  • Accredo
  • Coram
  • Diplomat Specialty Infusion Group

Thank you to our 2018 Bronze Sponsors:

  • Advanced Aeromedical
  • Arrowhead Pharmaceuticals
  • Adverum Biotechnologies
  • Insmed
  • Philips RespirTech

Thank you to our 2018 Non-profit Sponsors:

  • COPD Foundation
  • National Organization for Rare Disorders (NORD)
  • Patient Services, Inc (PSI)
  • Plasma Protein Therapeutics Association (PPTA)
  • University of Florida Alpha-1 Antitrypsin Research Program

2017 National Education Conference Highlightsplus

The Alpha-1 Foundation’s Annual National Education Conference is a unique opportunity for many newly diagnosed Alphas and their families to receive answers to their questions and meet others like them. The 26th annual conference in Chicago, IL was no exception. After final review, 652 attendees from 45 states and 5 countries gathered on June 24 – 26 to speak to leading experts on Alpha-1, network with peers, and get involved in the Alpha-1 community through local support groups, research, awareness activities and fundraising.

View the 2017 Conference Agenda as a PDF here.

All of the 2017 conference presentations are available to view online at your convenience.

Thank you to our 2017 Platinum Sponsors:
AlphaNet
CSL Behring
Grifols
Shire

Thank you to our 2017 Gold Sponsor:
Dohmen Life Science Services

Thank you to our 2017 Silver Sponsors:
Accredo
Coram
Diplomat

Thank you to our 2017 Bronze Sponsors:
Advanced Aeromedical
Arrowhead Pharmaceuticals

Thank you to our 2017 Non-profit Sponsors:
COPD Foundation
National Organization for Rare Disorders (NORD)
Patient Services, Inc
Plasma Protein Therapeutics Association (PPTA)

2016 National Education Conference Highlightsplus

The Alpha-1 Foundation’s Annual National Education Conference is a unique opportunity for many newly diagnosed Alphas and their families to receive answers to their questions and meet others like them. The 25th annual conference in Miami, FL was no exception. After final review, 610 attendees from 45 states and 5 countries gathered on June 24 – 26 to speak to leading experts on Alpha-1, network with peers, and get involved in the Alpha-1 community through local support groups, research, awareness activities and fundraising.

View the 2016 Conference Agenda as a PDF here.

All of the 2016 conference presentations are available to view online at your convenience.

One of the highlights Friday afternoon was the Community Forum, which offered attendees an opportunity to meet with community leaders and discuss ways they can participate in shaping the future of Alpha-1. This was especially fitting with this year’s theme “Without YOU There Is No Solution.” Further weaving the theme throughout the weekend was the Foundation’s exhibit booth, which featured a quiz entitled “What is Your Alpha-1 Personality?” Over 40 percent of attendees took the quiz and were given one of four results: advocacy, fundraising, research or support. Take the Alpha-1 quiz and share your results with the Foundation on social media!

Read more about “helping ordinary people do extraordinary things” and the rest of Friday’s conference program.

For the second year, the conference offered Meet the Experts, an opportunity for Alphas, their caregivers and families to have “15-minute conversations” with Alpha-1 Clinical Resource Center physicians and ask their questions face-to-face. Over 45 Alphas and their guests took advantage of this opportunity and met with six doctors and the Alpha-1 Genetic Counselor.

The Foundation took time over the weekend to honor the many contributions and achievements that members of the Alpha-1 community have made. Friday evening at the Building Friends for a Cure (BFC) awards, attendees heard the Starfish Story about helping to save one beach-stranded starfish at a time, to make the point that "regardless of how insignificant it may seem to the eyes of others, we can all make a difference.” Read about this year’s many creative and inspired fundraisers.

Presented jointly by the Foundation and AlphaNet, the Advancement of Research Award was given to Mark Brantly, MD on Saturday evening for his dedication and determination to finding a cure for Alpha-1. The Foundation presented six more honorees with awards including the Dennis Pollock Spirit of Advocacy Award and the Inspirational Award. Read more.

THANK YOU to our 2016 Presenting Sponsors:

  • AlphaNet
  • Baxalta
  • CSL Behring
  • Grifols

Thank you to our 2016 Lead Sponsor:

Dohmen Life Science Services

Thank you to our 2016 Exhibitors:

  • Accredo
  • BioRx
  • Coram

Thank you to our 2016 Partners, Exhibitors, Non-profit Partners, and Research Studies:

Adult Liver Study
Advanced Aeromedical
Arrowhead Pharmaceuticals, Inc.
COPD Foundation
Heritage Biologics
National Organization for Rare Disorders (NORD)
Patient Services, Inc.
Plasma Protein Therapeutics Association (PPTA)
REACH
State of Florida Detection Program
University of Florida

2015 National Education Conference Highlightsplus

View the full 2015 Conference Agenda here.

2015 Alpha-1 National Conference opens with inspirational Appalachian Trail story, meetings with experts and session on community engagement.

Building Friends for a Cure honors community fundraisers; BFC program has raised more than $5 million over 10 years.

Thank you to our 2015 Presenting Sponsors:

  • AlphaNet
  • Baxalta
  • CSL Behring
  • Grifols

Thank you to our 2015 Lead Sponsor:

Dohmen Life Science Services

Thank you to our 2015 Exhibitors:

  • Accredo
  • BioRx
  • Coram

Thank you to our 2015 Partners, Exhibitors, Non-profit Partners, and Research Studies:

Advanced Aeromedical
COPD Foundation
National Organization for Rare Disorders (NORD)
Patient Services, Inc.
Plasma Protein Therapeutics Association (PPTA)
REACH
University of Florida Clinical Trials
Alpha-1 Antitrypsin Deficiency Adult Clinical and Genetic Linkage Study
Arrowhead Research Corporation

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Platinum Sponsors

AlphaNet
CSL Behring
Grifols
Takeda
 
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Gold Sponsor

 
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Silver Sponsors