2017 Cooley’s Anemia Foundation Patient-Family Conference You may also register online at http://doc-events.com/meet/caf2017
REGISTRATION FORM CAF THANKS THIS YEAR’S CONFERENCE SPONSORS:
NAME ADDRESS CITY
STATE
ZIP
PHONE EMAIL
ACCOMMODATIONS
I AM A:
PATIENT
FAMILY MEMBER
HEALTHCARE PROVIDER
OTHER
NAME(S) OF OTHER FAMILY
COLLEGE PARK MARRIOTT HOTEL AND CONFERENCE CENTER 3501 University Blvd E, • Hyattsville, MD 20783 (301) 985-7300 Guests must make hotel reservations directly with the hotel no later than June 16, 2017. We have secured a special rate of $124 (plus tax) per night for a room with up to 2 adults and 2 children (under 18).
MEMBER(S) ATTENDING:
(please provide ages of children)
Before the Conference begins, we will be holding a special Patient-Focused Drug Development meeting on Friday, July 7, from 10:00-3:00. We will also hold a special Thalassemia 101 introductory session on Friday, July 7 at 4:30 for families who feel that they need basic information about thalassemia. PLEASE SPECIFY THE NUMBER OF ATTENDEES IN YOUR PARTY WHO WILL BE AT EACH OF THE FOLLOWING:
PATIENT-FOCUSED DRUG DEVELOPMENT MEETING:
SAT. LUNCH:
THAL 101 SESSION:
SAT. DINNER:
FRI. RECEPTION:
SUN. BRUNCH:
SAT. BREAKFAST: PLEASE LIST ANY SPECIAL DIETARY REQUIREMENTS (VEGAN, VEGETARIAN, ETC.) HERE:
Visit http://doc-events.com/meet/caf2017/hotel/ or call (301) 985-7300 and request the special rate for the Cooley’s Anemia Foundation Patient Conference.
REGISTRATION DETAILS U.S. patients/family members who would like to attend the Conference but find travel expenses beyond their current means should contact directly Patient Services Manager Eileen Scott at
[email protected] by May 1, 2017. A limited amount of funds are available to help. Conference registration is free of charge to U.S. thalassemia patients, family members, and healthcare providers. Attendees from outside the U.S. will be charged a $300 per person fee to cover costs. Priority registration will be given to U.S. patients and family members. Registration forms must be returned no later than June 12, 2017 to: Cooley’s Anemia Foundation, 330 Seventh Ave #200, New York, NY 10001 You must pre-register for this Conference. We regret we are unable to register people onsite.
Cooley’s Anemia Foundation, Inc 330 Seventh Ave. #200 • New York, NY 10001 (212) 279-8090 •
[email protected]
www.thalassemia.org See registration submission details and hotel information on the back.
Photography © Saradpon Photography
THE COOLEY’S ANEMIA FOUNDATION’S
2017 PATIENT-FAMILY CONFERENCE JULY 7-9, 2017 COLLEGE PARK MARRIOTT HOTEL AND CONFERENCE CENTER HYATTSVILLE, MD 20783
CAF THANKS THIS YEAR’S CONFERENCE SPONSORS:
AGENDA FRIDAY, 7/7/2017 PRE-CONFERENCE: Patient-Focused Drug Development Meeting Potomac Ballroom Salon 1: 10:00 10:30 10:45 11:00 11:45 12:30 1:00 1:45 2:30 3:00
Registration Introductions and Opening Remarks Introduction to the Cooley’s Anemia Foundation The Impact of Thalassemia on Daily Life Discussion with panel and audience.
8:009:15
Welcome/Opening Remarks
9:00
Chelation for Transfused & Non-Transfused Patients
9:30
Growth & Development Issues in Thalassemia
9:50
Prevention & Management of Infections in Thalassemia
10:10
Questions
Tony Viola, National President Craig Butler, National Executive Director Panel of Patients and Parents
Panel of Patients and Parents
Conclusion
10:40
Blood Safety and Thalassemia TBA
11:00
Questions
11:10
Comfort Break Patient Panel: Transitions in Thalassemia
Potomac Ballroom Salon 1:
12:30
6:00 – 9:00
Opening Reception
Richard Ward, MSc, MBBS, MRCP, FRCPath (UHN Toronto General Hospital), Pranav Saha 1:30 2:10 2:55
SATURDAY 7/8/2017 Chasen Family Room: 8:00
Yoga
Parent Panel Managing Health Insurance in Thalassemia Gene Therapy/Stem Cell Transplant Update
3:20
Bone Issues in Thalassemia
3:40
Questions
Comfort Break
4:10
Doctor/Nurses Panel Q&A
5:30
Children’s Session Presentation
5:45
Session End
Chasen Family Room: Nurses and Social Workers 6:00 Committee Meeting Potomac Ballroom: 7:00
Dinner Dance
Potomac Ballroom: 8:00 – 9:00
Brunch
9:00
The Legislative Process
9:20
Kathleen Durst, MSW, LCSW (CAF), moderator
Lunch Presentation of Distinguished Scholar Award to Janelle Trieu
3:55
SUNDAY 7/9/2017 Cynthia A. Sayers, BA (Division of Blood Disorders, Centers for Disease Control & Prevention)
Thalassemia as a Public Health Issue
11:20
Thalassemia 101 An introductory session for parents/patients who need basic information on thalassemia. Chesapeake Ballroom:
Anthony Viola (CAF National President), Janet Kwiatkowski, MD, MSCE, Conference Chair (Children’s Hospital of Philadelphia) Janet Kwiatkowski, MD, MSCE (Children’s Hospital of Philadelphia) Tariq Ahmad, MD, FAAP (UCSF Benioff Children’s Hospital Oakland) Erica Esrick, MD (Boston Children’s Hospital)
10:25
CONFERENCE: 4:305:30
Breakfast & Registration
8:45
Lunch Current Approaches to Treatment Discussion with panel and audience. Next Steps and Closing Remarks
Potomac Ballroom:
Potomac Ballroom:
9:40 10:00
Fernando Tricta, ApoPharma Laurie Thomas, RN (Children’s Healthcare of Atlanta), moderator Michelle Rice (National Hemophilia Foundation) Mark Walters, MD (UCSF Benioff Children’s Hospital Oakland) Mona Al Mukaddam, MD (Hospital of the University of Pennsylvania)
Financial Management Considerations for People with Thalassemia Communications Strategies for Patients and Nurses
Lyle Dennis (Cavarocchi-Ruscio-Dennis) Lance Sevier (Pacific Capital Resource Group) Vanessa Nixon Carrion, RN (Children’s Hospital of Philadelphia)
Questions Group Sessions
10:15 – 12:00
• • • •
Parents - Meeting Room 101 Teens - Chasen Family Room Adult Patients - Meeting Room 105 Friends, Spouses, Partners - Meeting Room 102
TEENS’ AND CHILDREN’S SESSIONS FRIDAY 10:00-5:30
SATURDAY 8:45-5:30
SUNDAY 9:00-12:15
