2011 TAG Patient-Parent Conference

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Offline Andy Battaglia

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2011 TAG Patient-Parent Conference
« on: May 18, 2011, 02:22:15 AM »
TAG Patient/Parent Conference
Disneyland Paradise Pier Hotel
Anaheim, California
June 24 - 25, 2011

A unique way to gather important new information about thalassemia while meeting other patients and parents who can relate to the specific challenges associated with thalassemia.

Special room rates are available from June 21 - 27 for families wishing to extend their stay.
The following link is for room reservations:
https://resweb.passkey.com/go/Thalassemia
Click here to purchase specially-priced Disneyland® Resort Theme Park tickets!!
These special ticket prices are not available once you arrive at the Resort.
Ticket store closes at 9:00 PM PST on June 23, 2011 so don't delay.
Tickets are valid June 21 - July 4, 2011. Twilight tickets are NOT valid on June 21, 23, 26 and July 1, 4. 1-Day 1-Park tickets are NOT valid on June 23.
 
An alternate option for accommodations is Castle Inn and Suites.  For reservations go to www.castleinn.com  or call 714-774-8111 and book directly with them by indicating special "TAG Rate " of $98 (online under comments or special request) and the rate will be adjusted to the special TAG Rate.
 
TAG Conference Agenda Available

April 6, 2011 - A wide range of fascinating presentations and workshops is on the agenda for the 2011 TAG Patient/Family Conference, June 24-25 at the Disneyland Paradise Pier Hotel in Anaheim, California.  (Click here for information about hotels.)

The agenda for the conference is as follows:
 AGENDA: TAG Patient/Family Conference, June 25, 2011
7:00 a.m. - 7:55 a.m.
   Registration and Breakfast
    
8:00 a.m. - 8:10 a.m.
   

Welcome by Laurice Levine
    
8:10 a.m. - 8:30 a.m.
   

The Future of the Cooley's Anemia Foundation by Anthony Viola,

CAF National President
    
8:30 a.m. - 9:30 a.m.
   Comprehensive Care & Standards of Care
   Elliott Vichinsky, MD
        
9:30 a.m. - 10:30 a.m.
   Science of Blood Transfusion & Safety
   Yelena Ginzburg, MD
        
10:30 a.m. - 11:55 a.m.
   

Iron Measurement and What It Means

Chelation Options and Availability

Chelation and Toxicity
   

John Wood, MD

Thomas Coates, MD

Ellis Neufeld, MD
        
12:00 p.m. - 1:00 p.m.
   

Lunch and Awards

Honorees: Dr. Farid Boulad and Huythong Nguyen
1:05 p.m. - 2:35 p.m.
   Track 1
1:05 p.m. - 1:35 p.m.
   

Fertility and Thalassemia
   

Titi Singer, MD
1:35 p.m. - 2:05 p.m.
   Endocrine Care
   Maria Vogiatzi, MD
2:05 p.m. - 2:35 p.m.
   Cardiac Care
   John Wood, MD
1:05 p.m. - 2:35 p.m.
   Track 2
1:05 p.m. - 1:35 p.m.
   Osteoporosis and Thalassemia
   Patricia Giardina, MD
1:35 p.m. - 2:05 p.m.
   Pain and Thalassemia
   TBA
2:05 p.m. - 2:35 p.m.
   Nutrition and Thalassemia
   Ellen B. Fung, PhD, RD
1:05 p.m. - 2:35 p.m.
   Track 3
1:05 p.m. - 1:35 p.m. 
   Insurance Options
   Gargi Pahuja, MPH, JD
1:35 p.m. - 2:05 p.m.
   Transition of Care
   Janice Beatty, RN
2:05 p.m. - 2:35 p.m.
   Research Studies for Thalassemia
   TBA
1:05 p.m. - 2:35 p.m.
   Track 4
1:05 p.m. - 1:35 p.m.
   Gene Therapy
   Farid Boulad, MD
1:35 p.m. - 2:05 p.m.
   Stem Cell Transplant
   Mark Walters, MD
2:05 p.m. - 2:35 p.m.
   Bone Marrow Transplant
   Farid Boulad, MD
2:35 p.m. - 3:00 p.m.
   Coffee Break
3:05 p.m. - 3:30 p.m.
   Improving Adherence
   TBA
3:30 p.m. - 3:50 p.m.
   Enhancing Advocacy Skills
   Gina Cioffi, Esq.
3:55 p.m. - 5:00 p.m.
   Psychosocial - Patients/Adolescents/Siblings, Friends, S.O.'s/Parents/Doctors
7:30 p.m.
   
Dinner and Closing Remarks

Location: Festival Arena, Disneyland Park

Special honorees this year will be Dr. Farid Boulad and Huythong Nguyen.

A registration form, journal ad form and a printed copy of the agenda can be obtained by clicking here.   If you have questions, please contact Laurice Levine at lauricetag@aol.com.   

If you would like information on being sponsored for the Conference, please download the information sheet by clicking here.  If you are interested in donating money to sponsor a patient, contact Laurice Levine at lauricetag@aol.com.   

HOTEL REGISTRATION DEADLINE FOR THE TAG CONFERENCE HAS BEEN EXTENDED TO MAY 23!

We have been able to extend the deadline for discount hotel registration for this year's TAG Patient/Family Conference in Anaheim, CA  (June 24-25) to May 23.  We cannot extend further, so if you are going to the TAG Conference, please make sure you reserve your hotel room by May 23, and also mail your TAG Conference Registration Form to Eva Choy (eva_tag@yahoo.com) by May 23.

Our special rate for the Disneyland Paradise Pier Hotel is $139; you can make your reservation directly by clicking here. The special rate for the nearby Castle Inn and Suites is $98; for reservations for those rooms, go to www.castleinn.com  or call 714-774-8111 and book directly with them by indicating special "TAG Rate " of $98 (online under comments or special request) and the rate will be adjusted to the special TAG Rate. 
Andy

All we are saying is give thals a chance.

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Offline Supergirl

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Re: 2011 TAG Patient-Parent Conference
« Reply #1 on: May 19, 2011, 06:51:04 PM »
Thanks Andy
We are thinking of attending it. Would love to know who has registered or is planning to be there.
-SK

 

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