Thalassemia Patients and Friends
Discussion Forums => Announcements => Topic started by: Dori on July 29, 2010, 10:10:27 PM
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Thalassaemia International Federation Schedules 2011 Conferences
July 20, 2010 - The Thalassaemia International Federation (TIF) has announced that the 12th International Conference on Thalassaemia and the Hemoglobinopathies and the 14th International Conference for Patients and Parents will be held May 11-15, 2011 in Antalya, Turkey.
Antalya
Photograph of Antalya, Turkey
Organized by TIF and the Thalassaemia Federation of Turkey, with the official support of the Governorship of Antalya and the Municipality of Antalya, the theme of the conferences is "Hemoglobin Disorders in the Next Decade."
In a welcome letter on the conferences website (www.tif2011.org), TIF President Panos Englezos states that "these two simultaneous conferences aim on providing the latest scientific and medical updates to both health professionals and patients and their families and exchanging knowledge and experiences. Above all and very importantly, these conferences serve as great opportunity to built up new and strengthening existing relations and collaborations. It is only by working together, by being partners in the effort, that we can achieve our common aim: the best possible quality of care for every patient with thalassaemia wherever in the world he or she may live."
FAST FACT:
According to one study, the thalassemia carrier rate among the general population of Turkey is 2.1%; however, it is as high as 17% in some regions.
More detailed information on the conferences, including a call for abstracts, a list of main topics, a program overview and registration/accommodation information is on the conference website (www.tif2011.org).
From: http://www.cooleysanemia.org/index.php?option=com_content&view=article&id=309:thalassaemia-international-federation-schedules-2011-conferences&catid=1:latest-news
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im going inshallah
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I am dying to go but the cost makes it impossible for me to go.. :wah
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I am dying to go but the cost makes it impossible for me to go.. :wah
Seems like we are in the same boat ...
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Yea, I know those problems. I just keep my fingers crossed. Zaini i gonna send you a private message soon.
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i hope to go.. not sure though.. we (Maldivian thalassaemia Society) will see if we can find some sponsors to send few of our patients and parents..
are u going dore? i think i will know by end of this year if there is any possibility for me to go..
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It's looking highly unlikely that I will be going.
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I would love to go, i would not like to miss such one but unfortunatly it is held at the same time of the end of year exams of both my kids and i should be around :( Hope exams would be postponed
manal
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I'm faced with the same problem. My son's college exams start around then and he won't be available to watch the store full time. The cost is also a big factor, and the dollar has been sinking against the euro again.
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Andy, I personally feel that if u are not able to go, it is going to be a great loss for us all..
Manal, if i can go (which i would knw by end of this year), i had hoped to see u there..
Costing is such a big problem for all of us.. i know so many from here who deserves to be there, but cannot because of the cost constraints... it makes me so angry..
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Thank you Maako, i would love to see you too :hugfriend You are too very right about the cost
manal
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Hi Dori,
I'm having great difficulty in discussing any concerns with the congress. The hotel package is too expensive, so can't they recommend other hotels in the locality?
I don't drink alcohol, so I don't want to go to the Gala Dinner? If I have to book their Kremlin and Topkai hotels, then I don't want to pay for the dinner and will make my own arrangements. Why isn't this possible?
The excursions are way too expensive.
Nobody ever seems to get back to me with answers...this is soooo fustrating as the deadline for the discounted booking is nearing.
Please help.
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i got back from turkey close to last month. i travelled by turkish airlines and they stop in istanbul so it was a cheap ticket and i stayed at the paris london hostel. very affordable and free breakfast and tea through out the day and quite central walking distance from the tram station, main cites etc!
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I gonna back here soon. I am sick and need to rest.
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Get well soon Dore and happy new year :wink
manal
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Get well soon Dore.
Sharmin
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Get well soon Dore. :medicine
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Thank you both. I am on the road of recovery. Today is the first day I do not spend on the couch or in bed. So far so good but I realise I still do not naps. Actually, it is the very first time I fight such infection without antibiotics!!! I have millions of throat infections in my life and always take antibiotics. But not this time. Totally I against the law of my doctor. But yes, I knew it was viral so I decided not to take it.
I only have an annoying cough which usually "wakes up" during the nights....
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Dore.
For these night coughs,honey and turmeric in warm water helps.
Zaini.
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Thank you :hugfriend btw you havent a facebook account anymore? ( I know it was blocked by Pakistani government and recently unblocked)
But I had to quit Exjade and feel fabolous without it. So you all gonna see me a lot of posting when I restart it. I absolutely have no idee how I will do it this time. I only know my start dosage will be 250mg and I will be ordering a special nice water bottle very soon.
Owh and I am reading the booklet forAntayla now. Wether or not I should do an excursion. I need more friends to come along with me, hahaa :)
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Hi Dori,
My husband and I are both going. We are already registered. My 4th child Adel (3 1/2 yrs old) is Thal Major.
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It will be nice to meet each other. How's Adel's health? [transfusion scheme/chelation]
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Thanks for asking. Adel's made vast improvement after chelation (Exjade)/supplements following the members' suggestions in this website. I wonder why & how I got side tracked from managing his thalassemia? Honestly speaking, I only realised that he needed chelation (after approximatly 12 transfusions) when I read about it here. Can you imagine?? That was why I never pushed for chelation. Anyway, he's quite complex with chronic lungs/congenital heart disease all rolled into one. In our previous hospital, when I discussed Exjade, the doctors were reluctant to start due to his history of liver/renal infection after his heart surgeries plus they didn't have much experience dealing with Exjade then. When his spleen got so big, the drs thought he had storage disease (all the tests results were -ve), which we got side tracked again. Anyway, I'm so glad it all boils down just managing his thalassemia. It's been a long and arduous journey. Now, he's almost completely weaned off O2. We took him for an assessment in a special school in Singapore yesterday, which has OT/DT and we are so happy they said they're able to help him. So he will be starting school, which is amazing. Hope to see more of you guys in TIF Conference.
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I hope you fully recover real soon Dori. :getwell
I'm hoping to come to the Conference with my brother, but I'm hesitating until I know for sure whether there are any cheaper hotels nearby. :pray
Any information would be much appreciated, especially considering that the Congress does not provide any new information, other than what's on the web/site!!!
Time is running out fast!!!
:impatient
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I have asked my Turkish friends for help. Somebody out here???? Well, I suggest you also send me a private message 'cause I do easily forget things.
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Dori, you are going to Antalya?..that's wonderful..i am going too and i am also wondering if i should take the excursion...but it is expensive...maybe we should do a little excursion ourself?he..he..
i'd really love to see my friends again...it's these conferences that we get a chance to meet. I wonder who else is going?
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Dore, Nur, you guys will be seeing me ;) for the first time I will be attending any international conference!!!
Thank to TIF for approving my application - weeeeeeeeeee =)
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congratulations ayesha :D , u deserve to go :stars
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This is so cool!!!!! :hugfriend
I wanted to say yes to Nur, but....
First of all I return 18th May to the Netherlands. My friends (3 girls) will be there but a cousin of one of them comes from his home town to Antayla. So I am not sure of it is really possible, but I am wanted to say that we always can do a little sightseeing for usself (is not a word?)
I will post more tomorrow. Clock goes forward tonight... And I am already so tired. I couldnt slept last night from pain afther transfusion. I think I may officially say this is allergy related. A very intense pain in my spine and untill now a kind of liver pain. I would complain last night, but not now. I forbid myself.
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Turns out clock did not went forward. That's next week, but my dad kept telling us this all day long...
I got exams from 28th March to 2 April, but after that I have a week off. Which I cannot believe myself. I will get in touch with everyone from that date to exchange phone numbers and other data. I want to succeed in meeting everyone,
Does someone knows of Gabi from Germany is going and of she's doing alright? I haven't heard from her for months...
I am so happy for you Ayesha. if it's one who deserves it, it is you! <3
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congratzz to all who have made their registration n going to attend the confrence .. .. best ov luck guyzz. :)
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We'll report it all to everyone else; including you Umair.
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thanx Dore . we'll b waiting for News n updates regarding that Conference .. :)
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I keep in my mind I stay a bit longer away. Very illgal, I got classes, but I have followed very strictly my classes the past four years. I like your signature below your avatar. I would like to grown up again too!
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Dear all,
Very happy for those of you going for ths conf. :biggrin
However, I have an uncomfortable feeling abt the way each conference just seems to get costlier to attend, more exotic in locations, and just plain out of reach of those of us who actuallly do want the information it provides.
If the aim of these conferences is to disburse information >to thals all over the world! to those who do need it! ....and we so need it becoz we just do not have as many specialized doctors to rely upon :huh ... and If that is the aim..I am failing to see it met?!?
Our treatment (esp the older adult thals) has been the pioneering efforts of our extremely committed parents.
If the aim of these conferences is to help thals with new information ...I wonder if evryone agrees with me when I say it is not reaching those of us who really need it. Our doctors are unable to attend it too.. in fact it depends on us, how we manage our own healthcare in countries where healthcare is our own and not the Govt's responsibility.
Even software for computers is designed to be userfriendly...can not these conferences be planned in the same way?? I am going to be told we will get the printed info or the booklets or download frm the computer but believe me it is just not the same!
Ppl who are actuallly so devoted to finding out info for thals and that does not have to be a thal, someone like Andy should be sponsored every time without a second thought...and those of us whose priority was to actually attend the conference ...I don't mind if they hold it in the same place each time... smplace central, less costly, and smwhere where all ppl of all countries can attend it easily, freely and regularly. Just a dream eh? tut tut
Regards and best wishes to all.
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I know what you say and it is true. I dreamt about it last night; that they finally went on webcast too. I hope that happend soon!
I think many of us receive those Newsletters from Cooley's Anemia Foundation? They got their seminars as websinar (sp?) and record it . In that way ever human being can look it up at any time. I think about the guy who placed a pc in public where a lot of street children were... Well, that leads us to another topic but, well.... I will catch such paper you get afterwards about how much you like it.
Isis, where are you from?
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Dear Dori,
Nice to hear from you. I have read some of your posts and find you have such a soothing way of writing. :smiley
I am from India. Being one of the older thals and having seen a lot of what goes on....I have to bite my tongue not to say evrything that I feel inside :wink
If we get that dream true it will be something. Not getting to attend these conferences is not only about the information though....we get to meet and connect with so many people going through their different experiences with thal major from all over the world, at one place. There is no substitute to actually attending the thal conferences.
So, let's continue to dream that they(the powers that be) realise and aim towards having International conferences which are cost-friendly enough to enable maximum thals frm world-over to attend; and not make it like an achievement to be able to get to a conference for us thals. A conference should not be a financial challenge, it should be a health challenge we concentrate on overcoming ... I could go on but I am going to stop.
TC everyone.
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To each of you who is going to this conference: please get in touch with me. I would love to meet everyone and not hear later that you were that too. I remember last year I recognized something in the elevator, but I was afraid to ask! My glasses broke 3 months ago so now I got ordinary old glasses again so not really a point of recogizing. If that is a world, but I will come up with something.
I better take my supplements now and concetrate me on my homework for Turkish.
Dore
PS we got "Antayla-weather" at the moment in Netherlands - I love it!
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Good luck Dore, can't wait to hear from you when you are back xoxox
Manal
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dori, the conference is next month, have fun!
please keep us posted will all the detaills.
i was reading the timetable with the topics and speakers, i hope they'll share great new stuff that will make us all so very happy! i'm glad you're representing us there! please don't forget anything... you're our eyes and ears there :)
enjoy turkey!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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good luck to everyone who is going to 12th international conference at turkey...... :goodluck
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Hello Everyone, So far as I know I have emailed/contact each of you who have posted in this topic. Well, not Ayesha yet. I believe, have high hopes, I will recognize her (you) by myself. If you have not receive a message, please send me one! I would love all who I have met on these forums. Warm wishes, D
This sounds stupid but true. The hospital was overbooked for friday and I have a "free week" this week. What did we do or which choice did I have? I have set my transfusion for monday 9th May! Remember, my plane to Antayla departure at 8:30AM. Both are in Amsterdam, but I need to travel back home. So far, I have not find anyone who can bring me to Schiphol from Amsterdam and going by train is not an option. It's like topsport. I hope and wish for the best. I have considered to call tomorrow afternoon ( less busy) to see if there is another option, but honestly I really need this week to make and study everyone from the past week and two upcoming weeks so far as possible. Plus packing e.g.
If you believe this is very silly to do than please tell me and I will call.
Dore
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This post will also be re-posted as a new post as this is a very important question.
I want as many people as possible to bring this up at every opportunity at the TIF conference. If you see Dr Perrine, please ask for her comments, also.
Many have seen the latest updated prescribing instructions for Exjade, along with the bold black box warning near the top of the instructions. This can be seen attached to a post at http://www.thalassemiapatientsandfriends.com/index.php/topic,1928.msg16165.html#msg16165 Many have expressed shock and fear after reading the black box. Obviously, when we talk about chelators, there is still much room for improvement. There is a chelator based on desferal that would require administration by IV once per week for about an hour. Imagine that. A Chelator you use only once per week. No jabbing yourself. No nausea from your oral chelator. No risk of the several dangers present with Exjade. This drug is called S-DFO (starch desferal). This drug went through stage one trials but the company was never able to secure the financing that would allow it to continue trials. As a result, the patent has now been turned over to another company as payment for a loan. This chelator is just sitting while this company hopes for a buyer. The researcher who developed this drug is more than willing to take charge for any new company that wants to buy this patent and move forward. You, the patients need this drug to be developed and made available.
What I am requesting from anyone going to TIF, is to look for every opportunity to raise the question as to why S-DFO is not being developed and what can be done to bring this drug to trials because the patients need a safe easy-to-use chelator. Dr Perrine is on our side in this and should be seen as an ally. She will be presenting the latest info about her hemoglobin inducing drug at TIF, so please try to talk to her. At any chelation talk, please bring this subject up. We need to get it back in the public eye. What happens in the realm of thal treatment should not be decided only by how much money can be made.
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Hi,
I will be going to the conference in Turkey, me and my mum will be attending. I have never been to any of the international conferences and therefore really looking forward to it, and excited to meet lots of people.
Not really sure what to expect though, but hope to learn a lot from it and also have fun.
Hope to see you there!
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Andy, this is really a very important point. The more we have chelators, the more there will be compliance and safety. Hope our friends will discuss this point
manal
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i'm really looking forward to the updates of the conference... please hurry and let us know!!!!
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Hope everyone is safely back to home :wink
Manal
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Oh they enjoyed a lot in Turkey,as you can see on FaceBook,i am so jealous :biggrin .
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yeah they all enjoyed alot.... :-\ and i think taking rest.. :biggrin
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Hi people,
I am still in middle of compiling my notes in other-than-Tariq-readable format :) However, attached is the powerpoint presentation of the few slides i took snap of. Hope they are of some value. I will be posting a doc with bulleted points I noted down soon.
Tariq
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Most silly question of the century: How do you make a slideshow of your pictures?
My pictures are from bad quality (long story) and already on Facebook - an uncicum (if that's English too). The only thing I did not like is that I did not have enough time to meet and talk with everyone properly - my apologies.
I have followed almost all lectures I signed in for according to our Dutch schedule. I only missed the sickle cell disease workshop. If anyone went, please share those notes with me too. I would you forever be grateful.
It was very good to see everyone in real person, make a picture and chat around. I hope you all collected what you wanted to collect and bring home.
I am actually a week home now and having a throat infection for about 10 days. Again I totally lost my voice and I have not been outside at all today. I am freakin' busy with finishing this year, but when I have time I will upload the best pictures at the gallery.
Oh, from Perrine's lecture I did not understand a word. Honestly, I had no idea what she meant but I did make notes and had a chat with someone who made tons of pictures. And I heard old and new stuff. Let me think of it: curcumin won't increase your level of hgb, ???? also not, but fermeted papaya (from Japan) will.
Exjade story very short:
To get level of ferritin down: 30mg/kg/day
To maintain your level of ferritin: 20mg/kg/day
To increase your dose of Exjade: every step with 10mg/kg/day
Use 30mg/kg/day only when your doctor says it and when you have become sick by iron (not sure what this means)
And they use over 80mg/kg/day by serious heart problems along ???? Never ever try to do that on your own, right!!!!!!!
I won't be able to write my notes out before 9th June and even then I will take a few days completely rest.
Warmest wishes, -D
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@Dore,
While in power point, go to Insert Menu -> Picture -> New Photo Album, then select File/Disk and select all photos at the same time, which you want to include in slide show, and click Create. One picture will make one slide. Thats it. Options/labels might vary depending on the version of PowerPoint you have, good luck
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People are waiting to hear the lastest about osteoporosis. Someone?
Summary of Dore:
we have to take zinc supplements along vit d/calcium/magnesium? Dose?
we must prevent those iv infusions so long as possible
they did not say that
about how much
and we must be very careful with those iv infusions
That's all I can remember. I have those notes also, but like I said not time to write those out.
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80 mg/kg :faint
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Hi,
Writing my dutch summary about Turkey now I returned to this page. I have all my notes so I did not lost those. However, it will take me some more time to type this notes out. Also I find the abstracts very easy now. To make a long story short: I thought my classes would start 1 sept... I have got only once week of vacation left which will be spend mostly in the hospital :wah