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Annual National Education Conference

Alpha-1 Conference

The 27th Annual Alpha-1 National Education Conference will be held June 29 – July 1, 2018 in San Francisco, CA.

The 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 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.

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Information

Conference Venueplus

Hyatt Regency San Francisco Airport

Address:
1333 Bayshore Highway
Burlingame, CA 94010

Phone Number:
(650) 347-1234

View the layout of the hotel here.

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!

How to watch the conference online:

On Friday, June 29th starting at 3:45 PM PT/6:45 PM ET, you can watch Track 1 "Driving New Therapies and Tools in Alpha-1" on Facebook Live by going to the Alpha-1 Foundation’s Facebook page.

On Saturday, June 30th starting at 8:30 AM PT/11:30 AM ET, you can watch the General Session on Facebook Live by going to the Alpha-1 Foundation’s Facebook page.

On Saturday, June 30th starting at 2:00 PM PT/5:00 PM ET, you can watch the afternoon breakout sessions by clicking one of the following links:

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

Program

Pre-Conference Eventsplus

Thursday, June 28th

CSL Behring's 11th Annual Walk for Breath Celebration

Walk for Breath Agenda:

  • 2:00pm - 3:00 pm: Registration Onsite at Hyatt Regency San Francisco Airport Hotel
  • 2:45pm - 3:15pm: Buses will depart from the Hyatt Regency San Francisco Airport Hotel
  • 4:30pm - 5:45pm: Walk at Disney Family Museum
  • 6:00pm - 8:00pm: Educational Dinner at Fort Mason Center

Registration Process:

  • There is open registration onsite at the Hyatt Regency from 2:00 - 3:00pm on Thursday, June 28th.
  • The Walk for Breath is open to all patients and caregivers attending the National Conference. However, this year CSL Behring will have a cap on the number of attendees at the Walk for Breath Celebration. We encourage everyone to come to open registration early to secure their spot at the Walk for Breath Celebration.
  • Due to state and federal laws, we are unable to permit healthcare professionals to attend this event. 

Friday, June 29th

Breakfast sponsored by Shire
Caricature sketches provided by Dale Axelrod Cartoons

Luncheon sponsored by Grifols
Alpha-1, Super Star of Modern Medical Genetics by Robert A. Fallat, MD, Pulmonology, Retired

Conference Agendaplus

Don't miss the exciting general sessions and afternoon breakout sessions (also called "tracks")! All speakers have the ability to motivate, teach and inspire you to lead a healthy life. The sessions offer a large range of topics including Alpha-1 lung and liver, a research update, pulmonary rehab, advocacy and many more.

View the conference agenda as a pdf.

Thursday, June 28th

1:00 – 4:00 pm Early Conference Registration Hours
3:00 – 8:00 pm CSL Behring’s 11th Annual Walk for Breath Celebration

 

Friday, June 29th

8:30 – 10 am Breakfast sponsored by Shire
12 – 1:30 pm Luncheon sponsored by Grifols
9:00 – 5:00 pm Registration Hours
1:30 – 6:00 pm Exhibit Hall Hours
1:30 – 2:00 pm Conference Orientation for First Time Attendees
Cathey Horsak, Director of Community Programs, Alpha-1 Foundation
2:00 – 5:30 pm Meet the Experts
Registration available for questions with Clinical Resource Center doctors.
2:00 – 3:30 pm Community Engagement Forum – Ice Cream Social

 

Friday Afternoon Tracks

  Track 1 Track 2
3:45 – 4:30 pm Driving New Therapies and Tools in Alpha-1 – Presentation & Panel Discussion Part 1
Moderator: Jean Marc Quach, President & CEO, The Alpha-1 Project (TAP)
Alpha-1 Antitrypsin Deficiency 101 Lung
Jeanine D’Armiento, MD, PhD
4:35 – 5:20 pm Driving New Therapies and Tools in Alpha-1 – Presentation & Panel Discussion Part 2
Moderator: Jean Marc Quach
Alpha-1 Antitrypsin Deficiency 101 Liver
Jeffrey H. Teckman, MD

 

Friday Evening

6:00 – 8:00 pm Hospitality Receptions
CSL Behring, Grifols, Shire
8:00 – 9:30 pm Dessert Hour and Awards

 

Saturday, June 30th

7:30 – 8:15 am Breakfast
7:30 – 5:00 pm Exhibit Hall Hours
8:30 – 8:45 am Welcome and Opening Remarks
Gordon E. Cadwgan, PhD, Chair of the Board, Alpha-1 Foundation
8:45 – 9:30 am KEYNOTE - Patients as Partners: Having A Seat at the Table
Margaret Anderson, Managing Director, Deloitte Consulting LLP
(Previously Executive Director of FasterCures)
9:30 – 10 am

Alpha-1 Foundation: Driving the Mission
Henry R. Moehring, MBA, President & CEO, Alpha-1 Foundation

10:15 – 11:15 am Research Panel
Moderated by: Robert A. Sandhaus, MD, PhD, FCCP
Mark L. Brantly, MD
Jeanine D’Armiento, MD, PhD
Charlie Strange, MD, FCCP
Jeffrey H. Teckman, MD
Martin R. Zamora, MD
11:15 – 12 pm Platinum Sponsor Presentations:
CSL Behring, Grifols, Shire
12:00 – 1 pm Meet the Speakers
1:00 – 2:00 pm Lunch & Exhibits
2:00 – 4:00 pm Educational Program for Nurses:
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 Breakout Sessions

  Track 1 Track 2 Track 3 Track 4
2:00 – 2:30 pm Nutrition for Advanced Lung Disease
Peggy Dai, MPH, RDN, CNSC
Alpha-1 Liver Disease in Adults
Philip Rosenthal, MD
Public Policy Update
Johanna Gray
Understanding Your Genetic Testing
Kimberly Foil, CGC
2:35 – 3:05 pm Sex Spoken Here; Intimacy and the Patient with Chronic Illness
Deborah Fending, RN, BSN, AE-C
How to Treat Normal Respiratory Infections
Mark L. Brantly, MD
Access & Reimbursement Panel of Experts
Moderator: Johanna Gray
Barbee Bennington
Angela Merkens
Basics of Alpha-1 Liver Disease in Children
Philip Rosenthal, MD
3:25 – 3:55 pm Pulmonary Rehabilitation Update
Chris Garvey FNP, MSN, MPA, MAACVPR
Anxiety & Depression
Kristen Holm, PhD, MPH
Improving Access to Supplemental Oxygen
Susan Jacobs, RN, MS
Managing Alpha-1 Liver Disease in Children
Philip Rosenthal, MD
4:00 – 4:30 pm Update on Lung Transplantation for A1AT-d
Steve Hays, MD
Importance of Clinical Trials and Participation
Charlie Strange, MD, FCCP
Traveling with Alpha-1
Eben "Skip" Scribner
There Will Be Stress: Keeping a Lid on the Negative Impacts of Alpha-1 Caregiving & Getting
Bonnie Chakravorty, MSW, PhD
4:35 – 5:05 pm Replacement Therapy After Transplant
Martin R. Zamora, MD
Conditions Associated with Alpha-1
Robert A. Sandhaus, MD, PhD, FCCP
Social Media Do’s/Don’ts & Making Connections
Alexis E Artiles
Maria Virginia Deliz
Creating a Healthy Home While Living with COPD
Miguel Villarreal, BS, MLS/MT, LVN

 

Saturday Evening

7:00 – 9:30 pm Dinner & Awards

 

Sunday, July 1st

7:30 - 9:30 am Breakfast
8:30 – 9:30 am Memorial Service

 

Speakersplus

Margaret Anderson
Managing Director, Deloitte Consulting LLP
(Previously Executive Director of FasterCures)
Alexis E Artiles
Director of Marketing and Events, Alpha-1 Foundation
Barbee Bennington
Support Group and Program Coordinator, Alpha-1 Foundation
Mark L. Brantly, MD
Vice Chair of Research, Department of Medicine, Professor of Medicine, Molecular Genetics and Microbiology; Alpha-1 Foundation Research Professor, University of Florida College of Medicine
Gordon E. Cadwgan, PhD
Chair of the Board of Directors, Alpha-1 Foundation
Bonnie Chakravorty, MSW, PhD
Retired Professor, Tennessee State University; Board Member, AlphaNet
Jeanine D’Armiento, MD, PhD
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
Peggy Dai, MPH, RDN, CNSC
Senior Clinician Dietitian, UCLA Ronald Reagan Medical Center
Maria Virginia Deliz
Digital Media Manager, Alpha-1 Foundation
Deborah Fending, RN, BSN, AE-C
Staff Development Nurse, National Jewish Health
Kimberly Foil, CGC
Certified Genetic Counselor, Alpha-1 Foundation Genetic Counseling Program
Chris Garvey FNP, MSN, MPA, MAACVPR
UCSF Sleep Disorders and Pulmonary Rehabilitation
Johanna Gray
Senior Vice President, CRD Associates
Steve Hays, MD
Professor of Medicine, Medical Director of Advanced Lung Disease & Lung Transplant Program, University of California, San Francisco
Kristen Holm, PhD, MPH
Assistant Professor, National Jewish Health
Cathey Horsak
Director of Community Programs, Alpha-1 Foundation
Susan Jacobs, RN, MS
Clinical Research Nurse Manager, Pulmonary and Critical Care Medicine; Nurse Coordinator, Center for Advanced Lung Disease, Stanford University Medical Center
Angela Merkens
Volunteer Support Group Leader, Alpha-1 Foundation
Henry R. Moehring
President and CEO, Alpha-1 Foundation
Jean Marc Quach
President and CEO, The Alpha-1 Project (TAP)
Philip Rosenthal, MD
Professor of Pediatrics & Surgery, University of California, San Francisco
Robert A. Sandhaus, MD, PhD, FCCP
Clinical Director, Alpha- 1 Foundation; Executive Vice President and Medical Director, AlphaNet; Professor of Medicine, National Jewish Health
Eben "Skip" Scribner
President, Advanced Aeromedical
Charlie Strange, MD, FCCP
Professor of Pulmonary Medicine, Medical University of South Carolina (MUSC)
Jeffrey H. 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
Miguel Villarreal, BS, MLS/MT, LVN
Clinical Research Coordinator II, UCLA David Geffen School of Medicine
Martin R. Zamora, MD
Professor of Medicine, Division of Pulmonary Sciences and Critical Care Medicine; Medical Director of Lung Transplantation, University of Colorado

 

Session Descriptionsplus

Friday, June 29th

1:30 – 2:00 pm

Conference Orientation for First Time Attendees

This session will provide an overview of the program for the 27th Annual National Education Conference and opportunities to get involved in the Alpha-1 community.

2:00 – 3:30 pm

Community Engagement Forum – Ice Cream Social

Meet the community leaders and learn about how you can become involved in the Alpha-1 community. Enjoy ice cream and network with Alpha-1 volunteers, staff and community leaders.

 

Friday Afternoon Track 1

3: 45 - 4:30 pm Driving New Therapies and Tools in Alpha-1: Presentation & Panel Pt. 1
4:35 - 5:20 pm

Driving New Therapies and Tools in Alpha-1: Presentation & Panel Pt. 2

Adverum Biotechnologies: The ADVANCE trial evaluating a novel gene therapy to treat patients with Alpha-1 using a single-dose treatment

Arrowhead Pharmaceuticals: Development of ARO-AAT, an RNAi based therapeutic for Alpha-1 Antitrypsin Deficiency-related liver disease.

 

Friday Afternoon Track 2

3: 45 - 4:30 pm

Alpha-1 Antitrypsin Deficiency 101: Lung

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

4:35 - 5:20 pm

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.

Saturday, June 30th

8:45 - 9:30 am

KEYNOTE: Patients as Partners - Having a Seat at the Table

It seems there is a groundswell of activity and movement towards the goal of having patients as partners. How did we get here and where is this all headed? What role do foundations dealing with rare diseases need to play to ensure they have a seat at the table and are providing all they can to advance science and care models? What can current models offer as a path forward?

9:30 - 10:00 am

Alpha-1 Foundation: Driving the Mission

Get updated on the achievements and changes of the Alpha-1 Foundation, and why it is so important for Alphas to join in research efforts and the many volunteer opportunities available.

10:15 - 11:15 am

Alpha-1 Research Panel

Dr. Sandhaus will moderate a discussion between several of the top researchers in the Alpha-1 community regarding current and future Alpha-1 research to find a cure.

12:00 - 1:00 pm

Meet the Speakers

This session offers the opportunity for attendees to network with this year’s speakers and ask them questions directly.

 

Saturday Afternoon Breakout Sessions

  Track 1
2:00 - 2:30 pm

Nutrition for Advanced Lung Disease

People with advanced lung disease are often at risk to develop malnutrition. This session will discuss the role of nutrition interventions in the treatment of lung disease.

2:35 - 3:05 pm

Sex Spoken Here: Intimacy & the Patient with Chronic Illness

Intimacy is an essential part of well-being. This session will explore the ways chronic illness can change relationships and how this can be managed. 

3:25 - 3:55 pm

Pulmonary Rehabilitation Update

Pulmonary Rehabilitation improves function, symptoms, health status and mood. An update on this important intervention will be addressed during this session. 

4:00 - 4:30 pm

Update on Lung Transplantation for Alpha-1

This session will discuss the latest trends in lung transplantation and give an update on lung transplantation in Alpha-1.

4:35 - 5:05 pm

Replacement Therapy After Lung Transplatation?

This session will discuss whether Alpha-1 patients should continue augmentation therapy after their lung transplant.

 

  Track 2
2:00 - 2:30 pm

Alpha-1 Liver Disease in Adults

This session will discuss pathophysiology, management, treatment, screening, use of Fibroscan, and liver transplantation.

2:35 - 3:05 pm

Preventions & Treatment Strategies for Alpha-1 Individuals

This session will talk about ways to prevent and treat infections in Alpha-1 Antitrypsin deficient individuals.

3:25 - 3:55 pm

Anxiety & Depression

This session will talk about the symptoms of anxiety and depression, treatment options and coping skills. 

4:00 - 4:30 pm

Importance of Clinical Trials & Participation

This session will review the current clinical trials in Alpha-1 and how Alphas can become a part of them. 

4:35 - 5:05 pm

Conditions Associated with Alpha-1

Lung and liver problems are well known associations with Alpha-1, but there are many other conditions that may be related to Alpha-1; these will be reviewed in this session. 

 

  Track 3
2:00 - 2:30 pm

Public Policy Update

This session will discuss current and pending public policy that affects those living with chronic conditions such as Alpha-1. The presentation will help you learn the role of advocates in health policy and understand how you can engage as an Alpha-1 Advocate.

2:35 - 3:05 pm

Access & Reimbursement Panel of Experts

This session will help you identify the reources available to you regarding insurance and access decisions, and will also help you understand how to engage as an Alpha-1 Advocate on acces issues.

3:25 - 3:55 pm

Supplemental Oxygen Access

This session will provide an overview of current options for portable supplemental oxygen therapy, including the pros and cons of the different choices. Strategies that are ongoing to improve patient access to supplemental oxygen services will also be presented.

4:00 - 4:30 pm

Traveling with Alpha-1

This session will provide a brief explanation of the Alpha-1 Oxygen Travel Fund and an overview of supplemental therapeutic oxygen and planning for travel.

4:35 - 5:05 pm

Social Media Do's/Don'ts & Making Connections

Social media is a useful tool for creating awareness and sharing information. In today's ever-changing work of social media platforms, how much information actually stays private even if you have your settings at the most "private" level?

 

  Track 4
2:00 - 2:30 pm

Understanding Your Genetic Testing

This session will provide an overview of testing methods including genotyping and phenotyping, and will discuss what Alpha-1 test results mean for the individual and the family.

2:35 - 3:05 pm

Basics of Alpha-1 Liver Disease in Children

This session will review the normal functions of the liver and how these might be affected by liver disease. It will give you an understanding of the risks of liver disease related Alpha-1 in children and disucss the latest research in Alpha-1 pediatric liver disease.

3:25 - 3:55 pm

Managing Alpha-1 Liver Disease in Children

This session will discuss managing Alpha-1 liver disease in children 1 to 18 years of age. It will discuss the pathophysiology, management, and treatment as well as childhood sport participation.

4:00 - 4:30 pm

There Will Be Stress: Keeping a Lid on the Negative Impacts of Alpha-1 Caregiving & Getting

Drawing both from research findings and her own experiences as an Alpha-1 caregiver and "getter," the presenter will discuss common caregiving stressors (including transplant related), and ways to address them.

4:35 - 5:05 pm

Creating a Healthy Home While Living with COPD

This session will focus on educating patients and keeping their home environment clear of unnecessary particulates in the air. 

Accomodations and Travel

Hotel Reservationsplus

Overflow Hotel

Crowne Plaza Hotel San Francisco Airport
1177 Airport Boulevard
Burlingame, CA 94010
(650) 342-9200

Hotel Reservations

The room block at the Hyatt Regency is currently sold out. 

Overflow Block: 
The Alpha-1 Foundation has finalized the overflow block at the Crowne Plaza Hotel at the same conference rate of $149. The Crowne Plaza Hotel is 0.4 miles from the Hyatt Regency Hotel. Please note there is not a shuttle from hotel to hotel.

To reserve rooms:
Refer to block code A1F or group name Alpha 1 Foundation Conference 2018 Overflow when calling 1-877-252-1558 to make your reservations. To make reservations online, use the following link: Alpha 1 Foundation Conference 2018 Overflow

Airportplus

Preferred Airport

San Francisco Airport (SFO)

Shuttleplus

Hyatt Regency San Francisco Airport

The hotel’s complimentary shuttle runs every 10-15 minutes. From SFO, take your luggage to the Departures Level center island and look for the area marked “Hotel Shuttle.” The shuttle bus is marked “Hyatt Regency and Marriott.” For arrivals and departures between 12:00 a.m. and 4:46 a.m., free shuttles pick up guests every 30 minutes.

Crowne Plaza Hotel - Overflow

The hotel's free, fast, and reliable airport shuttle runs every 20 minutes from the hotel to each terminal at San Francisco Airport, between 3:54 a.m. to 11:54 a.m. with a call-to-request service available between 12 a.m. and 4 a.m.

Parkingplus

Hyatt Regency San Francisco Airport

Self-parking at the hotel will be available for a discounted rate of $12.50 per day. Please stop by the conference registration desk to validate your parking. There will be a validation machine there to insert your ticket for the validation.

Crowne Plaza Hotel - Overflow

Self-parking at the hotel is complimentary.

Explore - Burlingameplus

Free Downtown Burlingame Shuttle

With regularly scheduled stops at the Hyatt Regency San Francisco Airport Hotel and the Crowne Plaza San Francisco Airport Hotel, the Downtown Burlingame Shuttle can whisk you away to charming Burlingame, CA. Explore unique shops, lovely restaurants and activities for all ages in beautiful downtown Burlingame.

This shuttle also stops at the Burlingame Caltrain station, which connects San Francisco, San Mateo and Santa Clara counties.

View the trolley schedule.

View the Downtown Burlingame map.

Sponsorship and Exhibits

Sponsorsplus

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 Health Group, Inc.
  • 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

Exhibit Hallplus

The Alpha-1 Foundation would like to thank all of the exhibitors for participating in this year's conference. Please take the time to visit them in the Exhibit Hall.

Exhibit Hall Hours

Friday, June 29
1:30 pm – 6:00 pm

Saturday, June 30
7:30 am – 5:00 pm

Things to Know and FAQs

Generalplus

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

Thursday, June 28th
1:00 – 4:00 pm

Friday, June 29th
8:30 am to 5:00 pm

Saturday, June 30th
7:30 am to 2:00 pm

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 Tags
Conference name tags must be worn at all times in order to enter the exhibit hall and attend sessions and meals. Anyone not wearing an official conference name tag may be asked to leave the conference area.

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.

Cancellation Policy
All cancellation requests must be submitted via email or fax to kcaraballo@alpha1.org by June 22, 2018 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

Kids and Teensplus

Kids’ Room
The Alpha-1 Kids program is sponsoring activities for children attending the conference on Saturday, June 30 in the kids’ room from 8:00 am to 5:00 pm.

Teen Room
The Foundation is providing a Teen Room on Saturday, June 30 from 8:00 am to 5:00 pm near the pool as a gathering place for teens attending the conference. No adult supervision will be provided.

Nursesplus

Free Educational Program for Nurses - Nursing CEUs 
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 Alpha-1 Foundation will provide EMERGENCY ONLY oxygen supplies at the National Conference. If you require supplemental oxygen, you should work with your oxygen provider to have the necessary supplies sent to the hotel for your use. Please bring a current prescription for oxygen in the event you do require emergency use.

Unfortunately, the Alpha-1 Foundation will not be able to provide EMERGENCY SUPPLIES OF LIQUID OXYGEN this year. If you require liquid oxygen, you MUST bring adequate 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 with at least 30 days notice.

FAQs - Frequently Asked Questionsplus

I requested a vegan or gluten free meal. How do I let the hotel know?

Attendees who have requested a vegan (V) or gluten free (G) meal will have a V or G on their nametag denoting their special meal request. Please make sure to let your server know that you need a special meal and show them your nametag.

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 "Exhibitors & Industry" 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 all patients and caregivers attending the conference. However, this year CSL Behring will have a cap on the number of attendees at the Walk. We encourage everyone to come to open registration early to secure their spot. You must register to attend the walk directly with CSL Behring on Thursday, June 28th. There is open registration onsite at the Hyatt Regency from 2:00 to 3:00pm on Thursday, June 28. Due to state and federal laws, we are 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 29th at 1:30 PM PT where the speaker will give a detailed overview of the conference and agenda.
  • The sessions in Track 2 on Friday afternoon will provide introductory patient-oriented talks about Alpha-1 in the lungs and liver.

How do the afternoon breakout sessions work? Do I have to stay in the same track for the whole afternoon?

Take a look at the conference agenda and choose which presentations you would like to attend. You can mix and match which presentations in the afternoon breakout sessions you would like to attend. You do not need to stay in the same track for the whole afternoon. You can move from room to room when presentations end.

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

Registration

Patients, Family Members and Caregiversplus

Registration Deadline: May 15th

2018 Annual Alpha-1 National Educational Conference reaches capacity.

While we are excited to share that the 2018 Conference is now at full capacity, this means we are no longer able to accept registrations. We are once again going to share much of the programming as a web-cast so even though you may not be able to join us in California, you will be able to benefit from the educational sessions. We look forward to you joining us at the meeting or on Facebook Live.

Exhibitors and Industryplus

2018 Annual Alpha-1 National Educational Conference reaches capacity.

While we are excited to share that the 2018 Conference is now at full capacity, this means we are no longer able to accept registrations. We are once again going to share much of the programming as a web-cast so even though you may not be able to join us in California, you will be able to benefit from the educational sessions. We look forward to you joining us at the meeting or on Facebook Live.

To learn about exhibit opportunities at the National Conference, please contact Alexis Artiles, Director of Marketing and Events, at 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.

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Past National Conference Highlights

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
Shire
 
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Gold Sponsor

 
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Silver Sponsors