Singapore Scientific Programme Schedule

The schedule of events for the upcoming Singapore Conference can be viewed at

http://www.thalassaemia2008singapore.org/004ScientificProgramme.htm

If you have not yet registered, please do so soon. The schedule looks excellent and the conference will be well worth attending.



Text version with no columns: There are two simultaneous conferences.

1) 11th International Conference on Thalassaemia &  Haemoglobinopathies (Symposiums)
2) 13th International TIF Conference for Thalassaemia Patients & Parents (Sessions)

   
Scientific Programme
Pre-Conference Workshop, 7 October 2008 (Tuesday)
Main Programme, Day 1, 8 October 2008 (Wednesday)
Main Programme, Day 2, 9 October 2008 (Thursday)
Main Programme, Day 3, 10 October 2008 (Friday)
Main Programme, Day 4, 11 October 2008 (Saturday)
Novartis Lunch Symposium, 8 October 2008 (Wednesday)
Novartis Dinner Symposium, 8 October 2008 (Wednesday)
Osato Lunch Symposium, 9 October 2008 (Thursday)

Pre-Conference Workshop, 7 October 2008 (Tuesday)

KK Women's and Children's Hospital
The Auditorium
Workshop 1 ( 0900 - 1200 )
Magnetic Resonance T2* Assessment of Iron Overload
Workshop 2 ( 1400 - 1700 )
Diagnosis of Thalassaemia - Laboratory Methods, Molecular Basis and Screening Strategy
TOP>

Main Programme, Day 1, 8 October 2008 (Wednesday)
Suntec Singapore International Convention & Exhibition Centre
Ballroom 1
Opening Ceremony ( 0815 - 0915 )
Plenary 1 ( 0915 - 1000 )
Thalassaemia As a Global Health Problem,
Sir David WEATHERALL, United Kingdom
Tea break at Exhibition Area (Concourse, Level 3) ( 1000 - 1045 )

Room 1
   Room 2    Room 3

11th International Conference on Thalassaemia & Haemoglobinopathies
   

13th International TIF Conference for
Thalassaemia Patients & Parents
   

Free Paper Sessions
Symposium 1 ( 1045 - 1215 )
Molecular Therapeutics and Alternative Therapies for Thalassaemia
Chairpersons: Prof Eliezer RACHMILEWITZ, Israel /
Dr Michael ANTONIOU, United Kingdom

    * Gene Therapy - Is It A Reality?
      Dr Michael ANTONIOU, United Kingdom
    * Molecular Therapies in Beta-Thalassaemia
      Prof THEIN Swee Lay,
      United Kingdom
    * Oxidative Stress in Thalassaemia and
      Haemoglobinopathies: Mechanism and Treatment
      Prof Eliezer RACHMILEWITZ, Israel

   
Session 1 (1045 - 1215 )
Chairpersons: Prof Alan COHEN,United States of Amercia / Mrs Aggie MICHAEL, Singapore
What is Thalassaemia?

    * Background - How / Why Do We Get Thal? How Does It Become Major? When Does Treatment Start?
      Dr Paul TELFER, United Kingdom
    * Prevention, Screening & Ethics
      Dr Mary PETROU, United Kingdom
    * Transplantations
      Dr Phil DARBYSHIRE, United Kingdom

Blood Transfusions

    * Why Do Patients Need Blood Transfusions, What Happens During Transfusions? What Do We Do When There's A

Reaction?
      Dr Diana TEO, Singapore

Q & A
   

Free Papers 1
( 1045 - 1215 )
Novartis Lunch Symposium
(For Medical Professionals only)
( 1215 - 1345 )    Lunch Break
( 1215 - 1330 )    Lunch Break
( 1215 - 1330 )
Symposium 2 ( 1345 - 1515 )
Epidemiology
Chairpersons: Sir David WEATHERALL,
United Kingdom / Dr Vip VIPRAKASIT, Thailand

    * Why Are The Haemoglobin Disorders So Common?
      Sir David WEATHERALL, United Kingdom
    * Global Distribution and Heterogeneity of the Alpha Thalassaemias
      Dr Vip VIPRAKASIT, Thailand
    * Epidemiology of the Beta Thalassaemias
      Dr Roshan COLAH, India

   
Session 2 ( 1330 - 1500 )
Chairpersons: Dr TAN Ru-San, Singapore /
Ms Gargi PAHUJA, United States of America
Blood Donation

    * How to Encourage Voluntary Blood Donation?
      Myths & Beliefs of Blood Giving
      Speaker to be confirmed
    * Blood Transfusion and What It Means to
      Thalassaemics?
      Mr George CONSTANTINOU, United Kingdom

Heart & Its Problems

    * Cardiac Problems & Solutions
      Dr Malcolm WALKER, United Kingdom
    * Cardiac Problems & How Do We Deal with It in Asia (Before & After MRI T2*)?
      Dr DAN Giap Liang, Malaysia

Q & A
   

Free Papers 2
( 1330 - 1500 )

Tea break at Exhibition Area (Concourse, Level 3)
( 1515 - 1545 )
   

Tea break at Exhibition Area
(Concourse, Level 3)
( 1500 - 1535 )

Symposium 3 ( 1545 - 1725 )
Prevention
Chairpersons: Dr Mary PETROU, United Kingdom /
Dr THONG Meow Keong, Malaysia

    * Screening and Ethics of Prevention
      Dr Mary PETROU, United Kingdom
    * Thalassaemia Screening Programmes: The
      Malaysian Experience
      Dr THONG Meow Keong, Malaysia
    * Non-Invasive Prenatal Diagnosis
      Prof Rossa CHIU, Hong Kong SAR
    * Pre-implantation Genetic Diagnosis
      Prof Anver KULIEV, United States of America
    * Pre-implantation Genetic Diagnosis: The Singapore Experience
      A/Prof Samuel CHONG, Singapore

   
Session 3 ( 1530 ?1700 )
Chairpersons: Dr Paul TELFER, United Kingdom /
Ms LEOW Siew Tin, Singapore

    * Growth & Development - Puberty
      Dr Nikos SKORDIS, Cyprus
    * Endocrinology
      Dr Vera OH, Singapore
    * Bones, Osteoporosis
      Dr Ersi Dimoula VOSKARIDOU, Greece
    * Diet
      Ms Christine ONG, Singapore

Q & A
   

Free Papers 3
( 1530 - 1710 )

Novartis Dinner Symposium
(For Medical Professionals only)
( 1830 - 2100 )
   
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Main Programme, Day 2, 9 October 2008 (Thursday)
Suntec Singapore International Convention & Exhibition Centre
Room 1    Room 2
11th International Conference on
Thalassaemia & Haemoglobinopathies    13th International TIF Conference for Thalassaemia Patients & Parents
Plenary 2 ( 0800 - 0835 )
Survival Trends in Thalassaemia Major
Dr Caterina BORGNA-PIGNATTI, Italy    
Symposium 4 ( 0835 - 1000 )
Infections in Thalassaemia
Chairperson: Dr TAN Ban Hock, Singapore / Dr KOH Pei Lin, Singapore

    * Immune Status of Chronically Transfused Patients
      Dr LI Chi Kong, Hong Kong SAR
    * Overview of Infections in Thalassaemia
      Prof Galia RAHAV, Israel
    * Management of Asplenic Patients
      Dr TAN Ban Hock, Singapore

   Parents/Patients Interactive Session
( 0830 - 1000 )

Tea break at Exhibition Area (Concourse, Level 3) ( 1000 - 1020 )
Symposium 5 ( 1020 - 1150 )
Cardiac Complications
Chairperson/s:Dr TAN Ru San, Singapore/
Dr Athanasios AESSOPOS, Greece

    * The Heart in Transfusion Dependent Thalassaemia
      Dr Athanasios AESSOPOS, Greece
    * The Role of MRI T2*
      Dr Dudley PENNELL, United Kingdom
    * Treatment of Heart Failure in Thalassaemia Major
      Dr John WOOD, United States of Amercia

   Parents/Patients Interactive Session
( 1020 - 1150 )

Lunch Break
( 1150 - 1305 )

Osato Lunch Symposium (By Invitation)
( 1150 - 1320 )
   

Lunch Break
( 1150 - 1305 )

Launch of TIF New Guidelines Book
(1320 - 1340)
Dr Androulla ELEFTHERIOU, Cyprus
   
Plenary 3 ( 1340 - 1420 )
New Insights in Iron Chelation
Prof Antonio PIGA, Italy
Symposium 6 ( 1420 - 1540 )
Iron Chelation 1
Chairpersons: Dr Dudley PENNELL, United Kingdom /
Prof John PORTER, United Kingdom

    * Pathophysiology of Iron Overload
      Dr Z Ioav CABANTCHIK, Israel
    * Iron Overload: Consequences
      Prof John PORTER, United Kingdom
    * Iron Chelation: Overview and Monitoring
      Prof Maria Domenica CAPPELLINI, Italy
    * Iron Chelation: Impact on Survival
      Dr Paul TELFER, United Kingdom

Tea break at Exhibition Area (Concourse, Level 3)
( 1540 - 1610 )
Symposium 7
( 1610 - 1740 )
Iron Chelation 2
Chairpersons: Prof Aurelio MAGGIO, Italy / Prof Maria Domenica CAPPELLINI, Italy

    * Future Developments in Oral Iron Chelators
      Dr Des R RICHARDSON
    * Is There an Optimal Strategy for Iron Chelation?
      Prof Renzo GALANELLO, Italy
    * Management of the 'Difficult'Iron Overloaded Patient
      Prof Aurelio MAGGIO, Italy

     

Conference Dinner (By Ticket ONLY)
( 2000 - 2230 )
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Main Programme, Day 3, 10 October 2008 (Friday)

Suntec Singapore International Convention & Exhibition Centre

Room 1
   

Room 2
   

Room 3
11th International Conference on Thalassaemia & Haemoglobinopathies    13th International TIF Conference for

Thalassaemia Patients & Parents    
Plenary 4 ( 0800 - 0835 )
Fertility and Pregnancy in Thalassaemia Major
Dr Susan M TUCK, United Kingdom    
Session 4 ( 0800 - 0930 )
Chairpersons: Prof Antonio PIGA, Italy/ Mr George CONSTANTINOU, United Kingdom

    * HbE & Thalassaemia Intermediate
      Dr Vip VIPRAKASIT, Thailand

Chelation

    * Different Types of Chelators
      Prof Alan COHEN, United States of America
    * Iron Chelation Treatment Under Economic Restrictions
      Dr Suthat FUCHAROEN, Thailand
    * Iron Overload and Consequences
      Dr GOH Ai Sim, Malaysia

Q & A
Symposium 8 ( 0835 - 1020 )
Endocrine Complications
Chairperson/s: Dr Ratna CHATTERJEE, United Kingdom /
Dr Rekha BAJORIA, United Kingdom

    * New Perspectives on Hormone Replacement Therapy in Thalassaemia
      Dr Ratna CHATTERJEE, United Kingdom
    * Growth and Thalassaemia
      Dr Fabian YAP, Singapore
    * Current Perspectives on Pregnancies in Thalassaemia Major
      Dr Rekha BAJORIA, United Kingdom
    * The Burden of Osteoporosis in Thalassaemia
      Dr Ersi Dimoula VOSKARIDOU, Greece
    * The Impact of Genotype on Endocrine Complications
      Dr Nikos SKORDIS, Cyprus

Tea break at Exhibition Area (Concourse, Level 3)
( 1020 - 1040 )
Symposium 9 (1040 - 1210)
Liver Disease in Thalassaemia
Chairpersons: Dr LEE Lai Heng, Singapore / Prof Ali TAHER, Lebanon

    * Overview of Liver Disease in Thalassaemia
      Dr James O'BEIRNE, United Kingdom
    * Update on Management and Prevention of Hepatitis B
      A/Prof CHOW Wan Cheng, Singapore
    * Hepatitis C in Thalassaemia Patients
      Dr Roland CHONG, Singapore

   
Session 5 ( 1000 - 1130 )
Chairpersons:
Tan Ee Shien, Singapore / Mr Michael MICHAEL, United Kingdom
Psychosocial Problems

    * Patient's Perspectives
      Ms Louisa Di PIETRO, Australia
    * Parent's Perspectives
      Mrs Nailya T GULIYEVA, Azerbaijian

Hospital & Doctor Relationships

    * Doctors' Relationship and Responsibilities
      Prof Amal EL-BESHLAWY, Egypt
    * Hospital’s Relationship and Responsibilities
      To be confirm

Q & A

Lunch Break
( 1210 - 1310)
   

Lunch Break
( 1130 - 1300)
   
Plenary 5 (1310 - 1345)
Emerging Infections in Blood Transfusions
Dr Roger Y DODD, United States of America    Session 6 ( 1300 - 1430 )
Chairpersons: Dr GOH Ai Sim, Malaysia/
Mr Riyad ELBARD, Canada
Symposium 10 ( 1345 - 1525 )
Blood Transfusion
Chairpersons: Dr Diana TEO, Singapore/
Prof Constantina POLITIS, Greece

    * Blood Safety in the Asia Pacific Region
      Dr Diana TEO, Singapore
    * Haemovigilance and Transfusion Safety
      Dr Peter FLANAGAN, New Zealand
    * Advances in Blood Transfusion Therapy
      Prof Alan COHEN, United States of America
    * Red Blood Cell Pathogen Inactivation
      Prof Constantina POLITIS, Greece

   
Liver & Its Problems

    * How / Why Liver Has Its Problems? What are the Problems? How
      to Detect (Signs and Symptoms)?
      Dr LI Chi Kong, Hong Kong SAR, China
    * Future Treatments for Liver Problems / Failure
      Dr James O'BEIRNE, United Kingdom

Iron Measurement - MRI & Its Roles

    * T2*
      Dr TAN Ru-San, Singapore
    * Ferriscan
      Dr Farrukh SHAH, United Kingdom

Q & A

Tea break at Exhibition Area (Concourse, Level 3)
( 1525 - 1545 )
   

Tea break at Exhibition Area (Concourse, Level 3) ( 1430 - 1500 )
Symposium 11 (1545 - 1715)
Thalassaemia Intermedia / HbE
Chairpersons: Prof Eliezer RACHMILEWITZ, Israel /
Dr Anselm LEE, Singapore

    * Thromboembolic Complications in Thalassaemia Intermedia
      Prof Ali TAHER, Lebanon
    * Cardiac Function and Abnormalities in Thalassaemia Intermedia
      Dr Athanasios AESSOPOS, Greece
    * Haemoglobin E-b-Thalassaemia
      Dr Suthat FUCHAROEN, Thailand

   
Session 7 (1500 - 1610)
Chairpersons: Dr Michael ANGASTINIOTIS, Cyprus /
Mrs Nailya T GULIYEVA, Azerbaijan

    * Government Relationships & Responsibilities
      Ms Dawn ADLER, United States of America
    * Nurses' Relationships & Responsibilities
      S/r Emma PRESCOTT, United Kingdom
    * Nurses' Relationships & Responsibilities, The Asian Experience
      S/r OOI Ee Ee, Malaysia

Q & A
     

Asian Network of Collaboration
( 1800 - 2200 )
TOP>

Main Programme, Day 4, 11 October 2008 (Saturday)

Suntec Singapore International Convention & Exhibition Centre

Room 1
   

Room 2
   

Room 4
11th International Conference on Thalassaemia & Haemoglobinopathies    13th International TIF Conference for

Thalassaemia Patients & Parents    
Plenary 6 ( 0800 - 0835 )
The Future of Stem Cell Transplant in Thalassaemia
Prof Guido LUCARELLI, Italy          
Symposium 12 ( 0835 - 1000 )
Haematopoietic Stem Cell Transplantation
Chairpersons: Prof Guido LUCARELLI, Italy /
Dr William HWANG, Singapore

    * Stem Cell Transplant for Thalassaemia - Who Should Have It?
      Prof Guido LUCARELLI, Italy
    * Stem Cell Transplant for Thalassaemia - Experience in a Developing Country
      Prof LIN Hai Peng, Malaysia
    * Cord Blood Banking and Transplant in Thalassaemia
      Dr William HWANG, Singapore

Tea break at Exhibition Area (Concourse, Level 3)
( 1000 - 1020 )
Symposium 13 ( 1020 - 1200 )
Psychosocial Care
Chairpersons: Dr Michael ANGASTINIOTIS, Cyprus /
Dr CHAN Mei Yoke, Singapore

    * Improving the Quality of Life in Thalassaemia
      Prof Antonio PIGA, Italy
    * The Adolescent Thalassaemic
      Dr Michael ANGASTINIOTIS, Cyprus
    * Strategies to Ensure Compliance to Treatment in Thalassaemia
      Dr Caterina BORGNA-PIGNATTI, Italy
    * Patients' Perspective
      Mr George CONSTANTINOU, United Kingdom

   

 
   

2nd Ithanet Scientific Workshop
(1030 - 1250)

Lunch Break
( 1200 - 1315)
   

Lunch Break
(1250 - 1400)
Symposium 14 ( 1315 - 1455 )
Organisation of Thalassaemia Services
Chairperson/s: Prof Alan COHEN, United States of America /
Prof Antonio PIGA, Italy

    * Organisation of Thalassaemia Services: The Sardinian
      Experience
      Prof Renzo GALANELLO, Italy
    * Thalassaemia Services in Asia: The Asian Thalassaemia
      Network
      Dr Suthat FUCHAROEN, Thailand
    * The Role of TIF and Patient Associations in Promoting the
      Quality of Thalassaemia Services
      Mr Panos ENGLEZOS, Cyprus
    * Patients' Rights
      Dr Androulla ELEFTHERIOU, Cyprus
    * Introduction to M.Sc Course in Haemoglobinopathies
      Dr Rekha BAJORIA, United Kingdom

   

2nd Ithanet Scientific Workshop
(1400 - 1500)

Tea break at Exhibition Area (Concourse, Level 3)
( 1455 - 1515 )
Symposium 15 ( 1515 - 1600 )
Alpha Thalassaemia
Chairperson/s: Dr LAW Hai Yang, Singapore /
Prof Swee Lay THEIN, United Kingdom

    * HbH Disease: A Wide Spectrum of Clinical Severity
      Dr Vip VIPRAKASIT, Thailand
    * Spectrum of Alpha Thalassaemia Mutations in SE Asia
      Dr LAW Hai Yang, Singapore
    * Understanding Alpha-globin Gene Regulation
      Dr Richard GIBBONS, United Kingdom

   

Parents' Interactive Session
(1515 - 1630)
   
Symposium 16 ( 1600 - 1700 )
Sickle Cell Disease
Chairperson/s: Dr Anselm LEE, Singapore /
Dr Mark WALTERS, United States of America

    * Pathophysiology of Sickle Cell Disease
      Dr Paul TELFER, United Kingdom
    * Prevention of Complications in Sickle Cell Disease
      Dr Bernard DAVIS, United Kingdom
    * Stem Cell Transplantation for Sickle Cell Anaemia: Why, When
      and How?
      Dr Mark WALTERS, United States of America

   

National Association Interactive Sessions ?
Developed Countries & Developing Countries
( 1630 - 1730 )
TOP>

A Novartis-Sponsored Satellite Lunch Symposium,
8 October 2008 (Wednesday)
The Role of Bisphosphonates in Increasing Bone Mineral Density in Patients with Thalassaemia-Induced

Osteoporosis
1230 - 1235    Welcome and Introduction     Ersi Voskaridou
1235 - 1255    Osteoporosis in Thalassaemia Patients

    * Prevalence of osteoporosis in patients with thalassaemia and contributing factors (eg, hypogonadism,

bone marrow expansion)
    * Dysregulation of bone metabolism – activation of bone resorption in patients with thalassaemia
    * Zoledronic acid for treatment of thalassaemia
      -induced osteoporosis – dosing regimens and results

   Ersi Voskaridou
1255 - 1315    The Role of Bone Markers in Thalassaemia – A Haematologic Perspective

    * Bone markers as measures of ongoing bone metabolism and response to therapy
    * Zoledronic acid in patients with thalassaemia
      – effect on bone markers and correlation with improved skeletal health

   Evangelos Terpos
1315 - 1325    Questions and Answers    Ersi Voskaridou
Evangelos Terpos
1325 - 1330    Concluding Remarks and Adjournment     Ersi Voskaridou
TOP>

A Novartis-Sponsored Satellite Dinner Symposium,
8 October 2008 (Wednesday)
Optimizing Iron Chelation Therapy:
Bridging Clinical Data and Patient Management
1830 – 1930    Dinner    
1930 – 1935    Welcome and introduction     John Porter (London, UK)
1935 – 2000    Complete iron chelation: progressing insights

Content

    * Iron overload and organ damage
    * Cardiac iron loading due to transfusional iron overload 
    * NTBI and control with deferasirox
    * Removal of cardiac and hepatic iron with deferasirox

   John Porter (London, UK)
2000 – 2025    Iron chelation therapy; what have we learned recently?

Content

    * Beneficial effects of iron chelation therapy
    * Short overview currently available iron chelators 
    * TIF guidelines: iron chelation algorithm
    * Deferasirox
      - 3.5 year clinical trial data on efficacy and safety
      - new data on doses > 30 mg/kg/day
    * Effect of deferasirox on quality of life

   Maria Domenica Cappellini (Milan, Italy)
2025 – 2050    How to optimally manage iron toxicity in our daily practice

Content

    * Case study of a patient with thalassaemia major who is treated effectively with deferasirox (dose > 30

mg/kg/day). The case presentation will focus on:
      - Tcorrect dosing (starting dose and titration) of deferasirox
      - adverse event management

   Ali Taher (Beirut, Lebanon)
2050 – 2100    Panel discussion    
TOP>

Osato Research Institute Lunch Symposium, 9 October 2008 (Thursday)
Protection of Oxidative Stress in Hemoglobinopathies and in DNA damaged liver cells by Fermented Papaya

Preparation (FPP)
Osato Research Institute is proud to host a Sponsored Lunch Symposium
on October 9th , 2008 at the International Thalassemia Conference

This free Lunch Symposium is being presented at
Ballroom 2 from 11H50 to 13H05
and its goal is to share with the medical professionals the clinical trials on:

Protection of Oxidative Stress in Hemoglobinopathies and in DNA damaged liver cells by Fermented Papaya

Preparation (FPP)


Introduction

Eliezer Rachmilewitz , MD
Edith Wolfson Medical Center, Holon-Israel


Speakers

What is Oxidative Stress?
Andrew Jenner, Ph.D.
National University of Singapore

The Effect of Fermented Papaya Preparation ( FPP ) on oxidative stress in hemoglobinopathies
Eitan Fibach, Ph.D.
( Hadassah University Hospital, Ein-Kerem, Jerusalem, Israel )

DNA Protection in the liver by FPP,
Evidence from clinical trials
Francisco Marotta , Ph.D.
University of Milano , Italy


Keep in mind that seating is limited to 500, so please come early to reserve your seat at the Lunch

Symposium. We hope to see you there.

We encourage you to visit Osato International exhibiting booth # 6 during the conference to learn more about

our product and the numerous independent scientific publications.
TOP>
* Programme subject to change without prior notice.


                                  Organised by:                                           Supported by       

       Conference Secretariat &
                                                                                                             

                       Housing Bureau:

                                                     
Home | Contact Us | Website by ace:daytons direct | © 2007 International Thalassaemia Conference 2008

  ITC 2008 Conference website updated as of 08/28/2008
   

Wow! quite a few things going around!

I am looking forward to hearing how they address these items. 

I hope Micheal Antoniou has something exciting to say:) 


Sharmin

hey ...
why dont you try to shooot  all conference  .. and then upload on youtube ... then it willl available for all members .  and all over the world for internet users..

Hi Andy

I was going thru the agenda and there are some interesting topics running parallely, how should we divide ourselves so that none of the topics get missed up.

Also is there a way it will be available for other members. Have you spoken to Kymn, or shal I talk to her.

Thanks

Puja

Hi Puja,

Keep in mind that the scientific programs are sometimes quite hard to follow for long periods as they are quite technical, so you may want to plan to spend more time in the patient and parent programs, which tend to deal with the issues that patients and parents face, rather than the direction new research is directed. I do go to quite a few of the scientific presentations also, but find I have my limits as my brain goes numb after absorbing so much information. I think the best approach is to make some priorities of what you want to hear the most and make a point of attending those first. Be flexible and don't feel bound to sit through something if you fond yourself losing interest in a particular presentation. Take a break and check out what else is going on or just mingle with others who are hanging out in the common areas. There may be time when people split up to cover the different things going on and hopefully we can get fairly good coverage of most of the events by doing that.

I have not heard from anyone involved in the conference recently and have avoided contacting them as I assume at this point, the preparations are keeping them very busy. You may want to contact her with any questions you have.

Hi Andy

Sorry to confuse you guys!.


 However I clarified with Kymn(Eponine), Parents will be allowed only for Room 2 presentations, cos HSG(Health Authority of S'pore) restricts the room one presentations only for Doctors. I asked Kymn wether you wil allowed, so she was not sure about that as you are signed up as  supporter and not a Doctor. i think from all of us only Dr marwaha will be allowed to attend and the transcripts and stuff only he might have an access to it. As for us we might not have an access to anything, I was wondering how will we share it with the rest of our group.

What we can do is may be we can meet the specfic Doctors later and ask them, stuff.

I am in touch with S'pore people, let me know if u need anything to be done.



 

If we are not allowed to attend the medical presentations, the conference will have a greatly reduced value and for myself, almost NO value, resulting in a huge waste of time and money for me and most others. If this is the case, the organizers had a responsibility to inform us of this long ago and not after it is too late to change our plans.

I am completely disgusted. It is a 26 hour trip for me each way and the trip is costing me thousands of dollars and for what? Can anyone from Singapore answer what is the point of the conference if I am supposed to attend What is Thalassaemia and Why Do Patients Need Blood Transfusions, rather than Molecular Therapeutics and Alternative Therapies for Thalassaemia??? This is utterly ridiculous and if the explanation is the government doesn't allow this, then TIF had absolutely NO business allowing Singapore to hold this conference!

Hi Andy

I spoke to Kymn and Derrick at length. Has Derrick replied to yourmail. I told him people are flying in from USA,Egypt, India and all over the place basically. Also that we are very much aware of the basics and our interest is the more technical stuff which is critical for us. They said even they have argued and it is the against the law. The sad part is we would have been told this on the registeration stage and I just happened to call Kymn when I was thinking who wil attend what to cover all the topics, so that we donot miss out anything.  They should have indicated it clearly on the website.

According to Derrick we wil be allowed to attend the Room 1 in which Room 2 has been indicated as grey boxes. Even after talking to them the conclusion is it is agaisnt the law, we cannot attend the important presentations like molecular research etc.

Wonder what we will do, second day looks as only parents interactives session.

 

Hi Puja,

No one from the Singapore organizers even had the courtesy to respond to my emails, my post here, or on Facebook. They have rendered this conference a sad, expensive joke on the attendees and they knew exactly what they were doing. The ONLY thing that has mattered the entire time for TIF, UKTS and the Singapore thal society, was holding the conference in Singapore. We have been intentionally misled by a small group whose agenda has absolutely nothing to do with providing a worthwhile experience to the many patients and parents who have spent huge amounts of money and are taking the time off from work or school and their lives to attend what they think is a medical conference. Instead we will be treated with topics with names like What is Thalassaemia?  Hmmm...didn't someone here write an article with that very name so that people who knew very little about thal could be introduced to what is involved in thal and its treatments? Do I really need to fly across the world at great expense to hear a presentation on that???

I am completely disgusted and now I have to convince myself to still get on that plane early tomorrow morning to begin a 26 hour trek to Singapore so I can learn what thalassemia is and why thals need blood transfusions. I am sick about this. For those thinking we will all come back with mountains of new information, please don't expect much, if anything.

Several of us have been joking about getting arrested in Singapore because it is known for being a very restrictive country. Who would have thought the reason we'd be arrested would be for attending the conference itself?

Andy,

I absolutely agree with you. It is surprising that they (Singapore Conference Organizers) were NOT upfront and did not mention earlier that the medical conferences are only for doctor's. I am very surprised and can see why you are mad on them. For knowing the common things about Thalassemia - we have to meet at a global level !! - which lot of us know in our dreams now

What we need to hear - What are the advances done, What are the possible new cures coming up and the new medical advancements - which most likely will be discussed in the medical conferences

Andy --> While, I can understand your dismay - I would say - Try to see the positives of what you are going to get. You going to meet a lot of buddies you wanted to see. You get to take a break from your daily life (I know - that is all at the expense of your time/money/energy and lot of scheduling you might have to go around). But, Andy - Let's look at the positive side of it for now.

Have a nice time and do let us know if you need anything, while you are there.

That is frustrating and wste of a lot of money and time. my life is up side down and my children are moving to another house for what?? All important lectures are in room one, nothing important at all in room 2

Andy , Puja, Eponine.. when i received the invoice of registration it stated clearly that parents have the right to attend all scientific sessions in room 1 and 2 except the workshops as found below.

Patient / Parent / Supporter
Name badge, conference bag, programme cum abstract book.
Admission to all scientific sessions at the 11th International Conference on Thalassaemia & Haemoglobinopathies and the 13th International TIF Conference for Thalassaemia Patients & Parents (excluding the Pre-Conference Workshops) and trade exhibition.
Invitation to opening ceremony.
One lunch and two tea breaks per full-day conference.
Certificate of Attendance.

manal

Manal,

You were the first person I thought of when I heard about this. I know how seriously we both take these scientific presentations and how much this will diminish the value of this conference for us. I think we should all have our registration receipts printed out to show at the door when they refuse admission. We should all also demand refunds. And we should also demand and end to TIF as the body that represents thalassemics internationally.

Narendra, seeing everyone is really great but it does not justify the time, expense or upset to our lives that this long distance travel causes. The organizers and TIF need to be held accountable for this unbelievable act of deception.

This must be the last conference location that is chosen because of reasons like the shopping is good and some org big shot gets to visit family! The conferences have to be returned to the people that they are supposedly held for or this site will never again promote or recommend another TIF conference. TIF has long forgotten the average thal and has become an organization full of people who want something for themselves.

Thanks Andy for your constant concern

I will print all the invoices even the hotel booking, who knows

i will let you know if i receive anything 

manal

I too have emailed the addresses you gave me andy, and wrote on the facebook wall of the thalassemia conference group all of my frustrations.. No reply yet... Already disappointed before it started....

Manal, i remember reading it too in the invoice... i already have it printed as well.. We should all meet at the registration and try whatever we can..

i was so frustrated that i even called my work organisation back home today, asking for ideas.. since i worked there before as a lab. tech trainee in a thalassemia screening lab, had the idea of printing cards in my name as such or getting some letter from Society for Health Education, stating that I am both thal patient and technical.. but i doubt that it would work since im already registered under the conference as a patient...

Like i said on the facebook wall, i, for one certainly dont want to sit and listen to what is thalassemia and why do we need blood transfusions while molecular and gene therapy presentations are being held in room 2. 

I am trying to look at the positive side of this, such as meeting u all... and thinking that topics such as growth, development, puberty, cardiac would be worthwile.. but what after that??? i do so want to listen to gene therapy, molecular therapy, pre implantation genetic diagnosis, topics under prevention and iron chelation and all the topics under the main day three 10th october (all about fertility and pregnancy i was soooooooo loooking forward to  )... i still cant beleive i will be missing ALL that  ...

like Andy said, for me, it is not worth juggling around my classes and assignments (and my final submissions start in not more than three weeks after the conference)...