Complete
Donation protected
St Vincent’s Institute of Medical Research will hold the first meeting for families that are affected by the rare and serious disease Fanconi anaemia, in Australia and New Zealand. Having Fanconi anaemia means that the children will almost certainly need life-saving bone marrow transplants in their childhood and they are far more likely than the average person to develop cancer.
The donations will be used to cover the costs associated with holding the event, which include: flights and accomodation for families who are travelling to Melbourne from all over Australia and New Zealand and an international expert of Fanconi anaemia; public transport; catering; Zoo entry. Currently there are no funds available from any charities and all families and medical professionals are travelling at their own expense.
Melbourne Museum and St Vincent's Institute are making very generous in kind contributions by allowing free use of their facilities.
We are having a scientific meeting on 13/10/17 with medical practitioners and researchers, and the following day we will have a social day at the Melbourne Zoo. The social day is particularly important, as given the rare nature of the disease most Fanconi anaemia patients never meet other people affected by the disease. The mental burden on the disease is incredibly heavy and we know that a fun day out, getting to know one another will lighten the load and be of great value to them.
Fanconi Anaemia Family Meeting webiste
https://familymeetinganz.wixsite.com/svimelb
The donations will be used to cover the costs associated with holding the event, which include: flights and accomodation for families who are travelling to Melbourne from all over Australia and New Zealand and an international expert of Fanconi anaemia; public transport; catering; Zoo entry. Currently there are no funds available from any charities and all families and medical professionals are travelling at their own expense.
Melbourne Museum and St Vincent's Institute are making very generous in kind contributions by allowing free use of their facilities.
We are having a scientific meeting on 13/10/17 with medical practitioners and researchers, and the following day we will have a social day at the Melbourne Zoo. The social day is particularly important, as given the rare nature of the disease most Fanconi anaemia patients never meet other people affected by the disease. The mental burden on the disease is incredibly heavy and we know that a fun day out, getting to know one another will lighten the load and be of great value to them.
Fanconi Anaemia Family Meeting webiste
https://familymeetinganz.wixsite.com/svimelb
Organizer
Wayne Crismani
Organizer
Fitzroy, VIC