Merry Christmas to everyone. Thanks for supporting the Blood Enquirer we will be looking foward to 2007 for many new changes that this year has brought foward.
Have a peaceful happy time at christmas may it bring you all good health.
Merry Christmas
14 December 2006
17 September 2006
SPECIAL CAMP OFFER
Come And Join the Thalassaemia Society of NSW
Vision Valley Get Away.
The Thalassaemia Society of NSW Inc. would like to invite you once again to join us in a fun weekend away. It’s a great opportunity for our patients, family and friends to meet and enjoy a fantastic weekend.
Cost: Free to Children 15 years and under and our NSW Thalassaemia, Sickle Cell and Blackfan Diamond Syndrome Patients. 16 yrs & up $100.00
When: 3rd to 5th November 2006
Where:7 Vision Valley Road Arcadia NSW 2159
Stringybark Lodge is where we will be staying
Includes: 2 Nights accommodation, Breakfast, Morning Tea, Lunch, Afternoon Tea, Dinner, Supper and Activities
RSVP: Rosa Dimitrakas 0400 116393 by 5th October 2006, booking form will be sent to you when you call to RSVP.
Limited space available. Our patients will get first priority so book early to avoid disappointment. Having been officially opened in August of 2001, Stringybark Lodge is the newest addition to the valley. It can accommodate 72 people.
There are two wings, 18 rooms (8 of which have en-suite bathrooms), two guest lounges, a large deck and an activities room. The activities room is complete with full sound system (including DVD player and large screen video projector).
This lodge also has both a kitchen and dining room and can be fully self-contained and a swimming pool.
The Thalassaemia Society of NSW Inc.
Vision Valley Get Away.
The Thalassaemia Society of NSW Inc. would like to invite you once again to join us in a fun weekend away. It’s a great opportunity for our patients, family and friends to meet and enjoy a fantastic weekend.
Cost: Free to Children 15 years and under and our NSW Thalassaemia, Sickle Cell and Blackfan Diamond Syndrome Patients. 16 yrs & up $100.00
When: 3rd to 5th November 2006
Where:7 Vision Valley Road Arcadia NSW 2159
Stringybark Lodge is where we will be staying
Includes: 2 Nights accommodation, Breakfast, Morning Tea, Lunch, Afternoon Tea, Dinner, Supper and Activities
RSVP: Rosa Dimitrakas 0400 116393 by 5th October 2006, booking form will be sent to you when you call to RSVP.
Limited space available. Our patients will get first priority so book early to avoid disappointment. Having been officially opened in August of 2001, Stringybark Lodge is the newest addition to the valley. It can accommodate 72 people.
There are two wings, 18 rooms (8 of which have en-suite bathrooms), two guest lounges, a large deck and an activities room. The activities room is complete with full sound system (including DVD player and large screen video projector).
This lodge also has both a kitchen and dining room and can be fully self-contained and a swimming pool.
The Thalassaemia Society of NSW Inc.
02 July 2006
Thalassaemia
A very interesting article about Thalassaemia recently published by Pathway, a publication available for Pathologists. It is a realistic look at Thalassaemia here in Australia. True life stories, diagnosis, treatments, iron overload, thalassaemia major and having a family are only some of the discussions presented in this Publication. Recommended reading please press on the Pathway link to view this article.
10 June 2006
Charity dinner in aid of Thalassaemia Research
The third annual charity dinner to support thalassaemia research at the Murdoch Childrens Research Institute is on the 17th June 2006 at the 'St George Kapouti Club' Victoria. Please support this worthwhile cause into the thalassaemia research. The Cell and Gene Therapy Group, at the MCRI, is the only research group in Australia dedicated to thalassaemia and related haemoglobinopathies. Without the ongoing support of organisations and people like you this group runs the risk of ending their efforts in finding a cure.
For further information Please contact DR Jim Vadolas
For further information Please contact DR Jim Vadolas
11th International Congress of Human Genetics
Thalassaemia Symposium Sponsored by Novartis
Sunday, 6 August 2006 - Brisbane Convention Centre, QLD (Room P1/P2)
This free symposium is a very worthwhile event to attend whether you are a patient or a healthcare professional. An overview of Thalassaemia will be presented by well respected speakers form all over the world. Topics such as management in different countries other than Australia, oral iron chelators and the latest research in finding a cure for thalassaemia will be presented. There will be an opportunity to ask questions as an expert panel of doctors and scientist has been scheduled after presentations.
Please Register your interest to Prescribed Events
Sunday, 6 August 2006 - Brisbane Convention Centre, QLD (Room P1/P2)
This free symposium is a very worthwhile event to attend whether you are a patient or a healthcare professional. An overview of Thalassaemia will be presented by well respected speakers form all over the world. Topics such as management in different countries other than Australia, oral iron chelators and the latest research in finding a cure for thalassaemia will be presented. There will be an opportunity to ask questions as an expert panel of doctors and scientist has been scheduled after presentations.
Please Register your interest to Prescribed Events
Thalassaemia Society of South Australia
NEWSLETTER JUNE 2006
Hi All,
It’s half way through the year and there are just a few quick things to let you know so let’s jump straight into it! But firstly well done to Stella and Giorgio for an outstanding article in the Sunday Mail on pg 5 no less – and a gorgeous photo J and lastly thanks for the survey responses and your support of SA’s involvement in Blood Fusion Australia.
Cheers
Irene (Ponias) Giakoumis
PresidentThalassaemia Society of SA Inc
GET TOGETHER DINNER
We’ve organised a MID YEAR get-together and we’d love to see you there. It’s a great opportunity to catch up and to also farewell one of our favourite nurses at the
Royal Adelaide – Cathy. Cathy is going to work overseas and we wish her all the best!
WHERE: Watermark ‘all you can eat’ restaurant, 631 Anzac Hwy (across from the Buffalo ship), Glenelg.
WHEN: Friday 16 June, 7pm
COST: Meals: Adults $25, there are also kids prices and children under 5 free. Drinks are on us.
We can also help out anyone who needs it, just let us know, that’s no problem.
RSVP: ASAP – sms Irene 0402 358 006
THALASSAEMIA SYMPOSIUM WEEKEND
As part of the International Genetics Conference in Brisbane this year, there will be a 1 day Thalassaemia Symposium on Sunday, 6 August. A fun weekend is planned. At this stage, Bill is confirmed to attend and we hope there will be more from SA to hear the latest on Thalassaemia and also to support the launch of Blood Fusion Australia.
Come along to find out more about new developments and support a group that is for ALL blood transfusion dependant people - not just Thals. We need your support, even if you are too busy! Bill has all the details of flights and accommodation. A package for 2 nights accomodation at Ibis Hotel in Brisbane INCLUDING return airfares to Brisbane from $308.00. *** BUT WE MUST BOOK NOW! Airfare Specials won't last long!***
We really hope you can make it for a fun and rewarding getaway weekend.
Contact Bill on 0419 858 046 to find out more.
The symposium highlights include:
An Overview of Thalassaemia in Asia Pacific,
Prof. Sir David Weatherall (UK)/ Thalassaemia overview / Management paradigm / pre-natal diagnosis,
Dr. Donald Bowden (Aust)/ Compliance to chelation: A key to life,
Sr Libby Reid (Aust) / Government program for Thalassaemia screening,
Dr. Lin Kai-Hsin (Taiwan) / Advances of iron level monitoring,
Dr Tim St Pierre (Aust) / QoL/ Health Economics perspective re: iron chelators Compliance /complication/Cost,
Dr. Thomas Delea (USA) / Management of iron overload - introduction of a
new agent (Exjade),
Dr. John Porter (UK) / Recent advances in BMT for Thalassaemia patients,
Dr. Mammen Chandy (India) / Genetic research into Thalassaemia /
Dr. Suthat Fuchareon (Thailand) /
Expert panel Q&A session.
The conference website is: http://www.ichg2006.com/
Hi All,
It’s half way through the year and there are just a few quick things to let you know so let’s jump straight into it! But firstly well done to Stella and Giorgio for an outstanding article in the Sunday Mail on pg 5 no less – and a gorgeous photo J and lastly thanks for the survey responses and your support of SA’s involvement in Blood Fusion Australia.
Cheers
Irene (Ponias) Giakoumis
PresidentThalassaemia Society of SA Inc
GET TOGETHER DINNER
We’ve organised a MID YEAR get-together and we’d love to see you there. It’s a great opportunity to catch up and to also farewell one of our favourite nurses at the
Royal Adelaide – Cathy. Cathy is going to work overseas and we wish her all the best!
WHERE: Watermark ‘all you can eat’ restaurant, 631 Anzac Hwy (across from the Buffalo ship), Glenelg.
WHEN: Friday 16 June, 7pm
COST: Meals: Adults $25, there are also kids prices and children under 5 free. Drinks are on us.
We can also help out anyone who needs it, just let us know, that’s no problem.
RSVP: ASAP – sms Irene 0402 358 006
THALASSAEMIA SYMPOSIUM WEEKEND
As part of the International Genetics Conference in Brisbane this year, there will be a 1 day Thalassaemia Symposium on Sunday, 6 August. A fun weekend is planned. At this stage, Bill is confirmed to attend and we hope there will be more from SA to hear the latest on Thalassaemia and also to support the launch of Blood Fusion Australia.
Come along to find out more about new developments and support a group that is for ALL blood transfusion dependant people - not just Thals. We need your support, even if you are too busy! Bill has all the details of flights and accommodation. A package for 2 nights accomodation at Ibis Hotel in Brisbane INCLUDING return airfares to Brisbane from $308.00. *** BUT WE MUST BOOK NOW! Airfare Specials won't last long!***
We really hope you can make it for a fun and rewarding getaway weekend.
Contact Bill on 0419 858 046 to find out more.
The symposium highlights include:
An Overview of Thalassaemia in Asia Pacific,
Prof. Sir David Weatherall (UK)/ Thalassaemia overview / Management paradigm / pre-natal diagnosis,
Dr. Donald Bowden (Aust)/ Compliance to chelation: A key to life,
Sr Libby Reid (Aust) / Government program for Thalassaemia screening,
Dr. Lin Kai-Hsin (Taiwan) / Advances of iron level monitoring,
Dr Tim St Pierre (Aust) / QoL/ Health Economics perspective re: iron chelators Compliance /complication/Cost,
Dr. Thomas Delea (USA) / Management of iron overload - introduction of a
new agent (Exjade),
Dr. John Porter (UK) / Recent advances in BMT for Thalassaemia patients,
Dr. Mammen Chandy (India) / Genetic research into Thalassaemia /
Dr. Suthat Fuchareon (Thailand) /
Expert panel Q&A session.
The conference website is: http://www.ichg2006.com/
05 June 2006
Australian Thalassaemia Association Workshops
On Saturday 17th June 2006 the ATA Executive will be hosting a workshop of ATA Delegates at the TSV office 333 Waverley Road, mount Waverley in Victoria.
After the workshop, delegates will be invited to attend the 3rd Annual Dinner Dance of the St George Kapouti Club fundraiser for research into Thalassaemia, with proceeds going towards the work Jim Vadolas and his team are undertaking at the Murdoch Childrens’ Research Institute.
For Further information or if you would like to attend please contact ATA via
Ph: (613) 9888 2211
Fax: (613) 9888 2150
Email: info@tsv.org.au
After the workshop, delegates will be invited to attend the 3rd Annual Dinner Dance of the St George Kapouti Club fundraiser for research into Thalassaemia, with proceeds going towards the work Jim Vadolas and his team are undertaking at the Murdoch Childrens’ Research Institute.
For Further information or if you would like to attend please contact ATA via
Ph: (613) 9888 2211
Fax: (613) 9888 2150
Email: info@tsv.org.au
16 May 2006
fusing around
Australia
Introducing fusion founders:
Flash fusion - Isabella Agius - QLD
Sparkles fusion - Giovanna Inserra - Vic
Bubbles fusion - Josie Stockden -WA
Captain Fusion - Bill Christos - SA
Electric fusion - Irene Giakoum- SA
We are also looking for more committee members around Australia, Who are ready to make a commitment. If you want to be involved in making a difference & be a part of a pro-active fun organisation.
Email us now!
blood fusion australia
Blood Fusion Australia
All Aboard !!!
We aim to target - patients with genetic blood disorders, families, friends, scientists, healthcare
professionals, community educators, emergency services, Australian Red Cross Blood services, Pharmaceutical companies, Rotary Clubs, Women health groups, Multi cultural groups, local, state and federal MP’s, students &
most importantly YOU!
BLAST OFF!!
Blood Fusion Australia
fusion launch
To boldy go where no other organisation has gone before.
Search for new frontiers.
Source new centres of influence and raise awareness across Australia.
Awareness Awareness Awareness Awareness Awareness
Blood Fusion Australia
fusion mission
We aim to raise awareness across Australia for blood transfusion dependant people in a fun, creative & effective environment.
We will educate, promote & develop strong partnerships with like minded organisations.
We will raise money to fund research, develop awareness campaigns.
We will provide support, advice & information that will always be fun for patients, families & friends.
Blood Fusion Australia - On The Move
On behalf of our Fusion founders of 'Blood Fusion Australia' (BFA), we welcome and thankyou for your interest into our new founded organisation. We welcome your interest and appreciate your much-needed support and of course you're exceptional expertise. So get your seat belt on and enjoy the ride you are about to embark.
Since the February 2006 Workshops, the steering committee has proceeded in developing an organisation that we strongly believe in: Blood Fusion Australia (BFA). We have identified a need to have a national organisation that broadly advocates for the interests of those with genetic blood conditions, raises awareness and provides community education.
Our draft mission statement is:
To form strong partnerships to raise awareness and inspire research, support, and learning for the key people involved with genetic blood conditions and those who are transfusion dependent including patients, families, friends and health professionals in a fun environment.
Our scope includes:
Genetic blood conditions: aplastic anaemia, thalassaemia, sickle cell disease, diamond black fan anemia, falconi’s anaemia,
Transfusion dependent conditions: mydeodysplastic Syndromes, leukaemias
Hereditary iron overload: haemachromatosis
BFA does not seek to replace individual associations dedicated to individual conditions but wish to work with them to collectively strengthen the profile of transfusion dependent conditions. We aim to work in unity and partnership with entities that share our goals and vision.
Our motto here at BFA is "FUN but SERIOUS". We have created a working environment that is engaging, fun and simplified. Although, our priority is to have fun we realise there is a serious side to the work we do now and the future.
Our vision is to represent the transfusion dependent and iron overload community, who although diverse, have shared issues. We do not believe that such an organisation exists and truly believe that the commitment we make to this organisation will make a difference.
Given the alliance of BFA to genetic conditions, we notify the community that Blood Fusion Australia will have a presence at the 11TH INTERNATIONAL CONGRESS OF HUMAN GENETICS, from August 6-10, 2006 at the Brisbane Convention and Exhibition Centre.
We invite interested individuals and organisations to find out more about us at our first public foray. We welcome any questions you may have and look forward to your response.
We wish you and your members all the best for International Thalassaemia Day.
Yours in Fusion,
Isabella Agius
Bill Christo
Irene Giakoumis
Giovanna Inserra
Josie Stockden
Since the February 2006 Workshops, the steering committee has proceeded in developing an organisation that we strongly believe in: Blood Fusion Australia (BFA). We have identified a need to have a national organisation that broadly advocates for the interests of those with genetic blood conditions, raises awareness and provides community education.
Our draft mission statement is:
To form strong partnerships to raise awareness and inspire research, support, and learning for the key people involved with genetic blood conditions and those who are transfusion dependent including patients, families, friends and health professionals in a fun environment.
Our scope includes:
Genetic blood conditions: aplastic anaemia, thalassaemia, sickle cell disease, diamond black fan anemia, falconi’s anaemia,
Transfusion dependent conditions: mydeodysplastic Syndromes, leukaemias
Hereditary iron overload: haemachromatosis
BFA does not seek to replace individual associations dedicated to individual conditions but wish to work with them to collectively strengthen the profile of transfusion dependent conditions. We aim to work in unity and partnership with entities that share our goals and vision.
Our motto here at BFA is "FUN but SERIOUS". We have created a working environment that is engaging, fun and simplified. Although, our priority is to have fun we realise there is a serious side to the work we do now and the future.
Our vision is to represent the transfusion dependent and iron overload community, who although diverse, have shared issues. We do not believe that such an organisation exists and truly believe that the commitment we make to this organisation will make a difference.
Given the alliance of BFA to genetic conditions, we notify the community that Blood Fusion Australia will have a presence at the 11TH INTERNATIONAL CONGRESS OF HUMAN GENETICS, from August 6-10, 2006 at the Brisbane Convention and Exhibition Centre.
We invite interested individuals and organisations to find out more about us at our first public foray. We welcome any questions you may have and look forward to your response.
We wish you and your members all the best for International Thalassaemia Day.
Yours in Fusion,
Isabella Agius
Bill Christo
Irene Giakoumis
Giovanna Inserra
Josie Stockden
13 May 2006
What is Thalassaemia?
Thalassaemia is a genetic blood disorder inherited from both parents. The amount of haemoglobin produced by the body is reduced.
Regular blood transfusions and iron chelation is required for the survival of patients with thalassaemia. Although, bone marrow transplant via the use of sibling donors has been successful with some thalassaemia patients, there is no other known cure.
Regular blood transfusions and iron chelation is required for the survival of patients with thalassaemia. Although, bone marrow transplant via the use of sibling donors has been successful with some thalassaemia patients, there is no other known cure.
08 May 2006
International Thalassaemia Day May 8th 2006
Today is dedicated to all those with Thalassaemia all over the world.
How they inspire us all, no matter how difficult the struggle.
All who live with this, teach us lessons each day
Live life to the fullest, have fun, be happy
And not let any day pass with regret.
Sharing experiences, helps tremendously and does not make us feel alone.
Smile, have strength and survive,
All who live with this know each day is important and not to be wasted,
Each and everyone of us can learn from people with thalassaemia
Maybe one day there will be a cure,
I for one look forward to that day.
A day in a perfect world wouldnt that be nice
Daydreamer is what i am.
A person without dreams is like a dog without a bone.
Yes today is International Thalassaemia Day, lets celebrate life and never forget those that have gone before us, that remain in our hearts forever more.
By Isabella Agius May 8th 2006
How they inspire us all, no matter how difficult the struggle.
All who live with this, teach us lessons each day
Live life to the fullest, have fun, be happy
And not let any day pass with regret.
Sharing experiences, helps tremendously and does not make us feel alone.
Smile, have strength and survive,
All who live with this know each day is important and not to be wasted,
Each and everyone of us can learn from people with thalassaemia
Maybe one day there will be a cure,
I for one look forward to that day.
A day in a perfect world wouldnt that be nice
Daydreamer is what i am.
A person without dreams is like a dog without a bone.
Yes today is International Thalassaemia Day, lets celebrate life and never forget those that have gone before us, that remain in our hearts forever more.
By Isabella Agius May 8th 2006
15 February 2006
A NEW BEGINNING
Dear Colleagues, Members and friends,
We have a high respect for all involved, past and present and the achievements gained through personal hard work put in over many years into ATA and State societies.
A workshop was held in Queensland over the weekend of the 3,4,5 Feb. 2006 with interested parties to evaluate the needs of a national organisation and brainstorm ideas for a new fresh simplified structure that includes all blood transfusion dependant people. This allows for the necessary focus to be given on conditions that have similar needs but have often been neglecte because they are less common. It also allows a broader reach and the opportunity to appeal to a larger audience.
We found this weekend to be an extremely positive, fun and productive time. We are now in the very first stages of planning an exciting proactive future for a National body laying the groundwork with strong and healthy foundations.
In the past, many discussions have been held in regards to achieving goals that have been tabled but, never actioned upon due to limitations within the current constitutional structure and limited funding, not to mention the tireless amount of time and energy invested by volunteers, that has always been appreciated.
The most recent discussion was held at the ATA AGM in Sydney 2005 where Isabella & Giovanna presented a proposed change to the ATA constitutional structure. The proposal was based on the needs assessment conducted in August 2005 of which all states were represented. The outcome of discussions held at the AGM was in our opinion disappointing but obviously required to initiate a new beginning outside the current structure. In our opinion, we now realise that trying to change the current structure would be extremely time consuming and costly as opposed to a fresh start.
We felt the only means of realising many of our goals in the near term would be to plan, workshop and plan some more before embarking on the development of a fun, simplified organisation to work in unity and partnership with entities that share our goals and vision.
We invite you and ATA, state societies, etc. to join us in realising this endeavour.
We value your individual response and ask that you forward your feedback in regards to this new development. We look forward to hearing from you as soon as possible.
We plan to move ahead to build a robust, exciting organisation and hope that you will join us. We have established this small steering committee to keep the development of a vibrant national body on track. Don’t hesitate to contact any one of us to discuss further.
warmly,
Isabella Agius
Bill Christo
Giovanna Inserra
Josie Stockden
We have a high respect for all involved, past and present and the achievements gained through personal hard work put in over many years into ATA and State societies.
A workshop was held in Queensland over the weekend of the 3,4,5 Feb. 2006 with interested parties to evaluate the needs of a national organisation and brainstorm ideas for a new fresh simplified structure that includes all blood transfusion dependant people. This allows for the necessary focus to be given on conditions that have similar needs but have often been neglecte because they are less common. It also allows a broader reach and the opportunity to appeal to a larger audience.
We found this weekend to be an extremely positive, fun and productive time. We are now in the very first stages of planning an exciting proactive future for a National body laying the groundwork with strong and healthy foundations.
In the past, many discussions have been held in regards to achieving goals that have been tabled but, never actioned upon due to limitations within the current constitutional structure and limited funding, not to mention the tireless amount of time and energy invested by volunteers, that has always been appreciated.
The most recent discussion was held at the ATA AGM in Sydney 2005 where Isabella & Giovanna presented a proposed change to the ATA constitutional structure. The proposal was based on the needs assessment conducted in August 2005 of which all states were represented. The outcome of discussions held at the AGM was in our opinion disappointing but obviously required to initiate a new beginning outside the current structure. In our opinion, we now realise that trying to change the current structure would be extremely time consuming and costly as opposed to a fresh start.
We felt the only means of realising many of our goals in the near term would be to plan, workshop and plan some more before embarking on the development of a fun, simplified organisation to work in unity and partnership with entities that share our goals and vision.
We invite you and ATA, state societies, etc. to join us in realising this endeavour.
We value your individual response and ask that you forward your feedback in regards to this new development. We look forward to hearing from you as soon as possible.
We plan to move ahead to build a robust, exciting organisation and hope that you will join us. We have established this small steering committee to keep the development of a vibrant national body on track. Don’t hesitate to contact any one of us to discuss further.
warmly,
Isabella Agius
Bill Christo
Giovanna Inserra
Josie Stockden
14 January 2006
National Contacts
Blood fusion Australia
Mobile 0421 044 597
Email bloodfusionaustralia@gmail.com
Thalassaemia society of VIC
333 Waverley Road Mount Waverley VIC 3149
Telephone +613 9888 2211
Email info@tsv.org.au
Thalassaemia society of SA
PO Box 10079 Adelaide Business Centre Adelaide SA 5000
Telephone +618 8231 5503
Email info@tssa.org.au
Thalassaemia association of WA
PO Box 879 Morley WA 6943
Email stocko@westnet.com.au
Queensland
Isabella Agius
Mobile 0421 044 597
Email isabellaagius@optusnet.com.au
The Thalassaemia society of NSW
PO Box 80 Marrickville NSW 2204
Telephone +612 9550 4844
Email thalnsw@pacfic.net.au
Australian Thalassaemia Association
333 Waverley Road Mount Waverley VIC 3149
Telephone +613 9888 2211
Email info@tsv.org.au
Mobile 0421 044 597
Email bloodfusionaustralia@gmail.com
Thalassaemia society of VIC
333 Waverley Road Mount Waverley VIC 3149
Telephone +613 9888 2211
Email info@tsv.org.au
Thalassaemia society of SA
PO Box 10079 Adelaide Business Centre Adelaide SA 5000
Telephone +618 8231 5503
Email info@tssa.org.au
Thalassaemia association of WA
PO Box 879 Morley WA 6943
Email stocko@westnet.com.au
Queensland
Isabella Agius
Mobile 0421 044 597
Email isabellaagius@optusnet.com.au
The Thalassaemia society of NSW
PO Box 80 Marrickville NSW 2204
Telephone +612 9550 4844
Email thalnsw@pacfic.net.au
Australian Thalassaemia Association
333 Waverley Road Mount Waverley VIC 3149
Telephone +613 9888 2211
Email info@tsv.org.au
Awareness Update
Statistics on the prevalence of Sickle Cell Anaemia, Thalassaemia, or other haemoglobiapathies in Australia is almost non-existant. There is literature that informs of the prevention of sickle cell anaemia, thalassaemia and other haemoglobinapathies around the world, but Australia is not even mentioned. Although the information provided gives prevalence data on the most common haemoglobinapthy mutations in different populations there are no numbers.
We require the co-operation from the Federal health department, hospitals, doctors and healthcare communtiy to assist us in collating this information. Australia is one of the most multi-cultural nations in the world and one of the largest immigrant nations. We must set up a National register of patients and carriers in highlighting the needs of patients and their families. The only successful cure is in prevention. Awareness is the KEY!
We require the co-operation from the Federal health department, hospitals, doctors and healthcare communtiy to assist us in collating this information. Australia is one of the most multi-cultural nations in the world and one of the largest immigrant nations. We must set up a National register of patients and carriers in highlighting the needs of patients and their families. The only successful cure is in prevention. Awareness is the KEY!
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