Raising awareness about inherited bleeding disorders such as haemophilia and von Willebrand disorder THANK YOU!!

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1 Raising awareness about inherited bleeding disorders such as haemophilia and von Willebrand disorder Haemophilia THANK YOU!! A rare genetic bleeding disorder Caused by an alteration in the gene making factor VIII (8) or IX (9) Occurs when blood doesn t clot properly as there is not enough of a protein in the blood (called factor VIII or IX) that controls bleeding Usually inherited, but 1/3 of people have no previous family history Incurable and can be life-threatening without treatment Treatment can help prevent repeated bleeding into muscles and joints, which causes arthritis and joint problems Most people diagnosed with haemophilia are male Women and men can have the genetic alteration causing haemophilia and pass it on to their children Some females who carry the gene can also have bleeding problems; some have haemophilia Affected Australians In Australia there are more than 5,900 people diagnosed with haemophilia, von Willebrand disorder or other related inherited bleeding disorders. To all who participated in Bleeding Disorders Awareness Week and Red Cake Day - we appreciate you! As another year comes to a close, we can not help but look back and smile on the success of Bleeding Disorders Awareness Week And it would not have been what it was without all of you! The week across the country has raised just over $10,000 as a result of Bleeding Disorders Week and Red Cake Day. These funds will go to support services and programs all across Australia. Once again, thank you for making this possible. We look forward to doing it all again in 2018! MARK YOUR DIARY 2018 Bleeding Disorders Awareness Week & Red Cake Day 7-13 October 2018 W: E:hfaust@haemophilia.org.au T:

2 Von Willebrand disorder (VWD) An inherited bleeding disorder Occurs when people do not have enough of a protein called von Willebrand factor in their blood or it does not work properly Thank you to George and his wonderful mum, Makaylie for a great Red Cake day in Morree Many people with VWD have mild symptoms but some people have a more severe form. With all forms of VWD there can be bleeding problems Many people are not aware they have the disorder and are currently undiagnosed Both men and women can have VWD and pass it on to their children. Other Factor Deficiencies Other bleeding disorders include rare clotting factor deficiencies and inherited platelet disorders Factor XI deficiency is the most common of the rare bleeding disorders, estimated at one in 100,000 people, and is the second most common bleeding disorder to affect women after von Willebrand disorder Myles was diagnosed with haemophilia this year, this was his first Red Cake Day. How can you help? Lincoln and his family got on board for a great Red Cake Day a ernoon tea.

3 The Horking and McCann Families once again hosted a Cupcake Sale in Echuca. Thank you to the staff at Calvary Mater Newcastle for a great red cake day stand HFWA hosted a Red Cake morning tea

4 Bendigo Bank Participation Now in its 9th, Donna Field has seen a small initiative she began in her community grow and grow. In 2009 she began contributing to Awareness Week by organising Paint the Town Red events locally in Neerim South. These events have been well-supported by the local community. The Neerim District Community Bank branch of Bendigo Bank and Bendigo Bank branches in the local regions of Gippsland also took part. Again this year the Bendigo Bank worked in partnership with HFA and all branches nationally participated in the week, with activities and raising awareness. We are extremely grateful to the branches who fundraised among their staff and community on our behalf. Some branches also sold The Red Cookbook for the first time and it was a great success. Congratulation to the Bendigo Bank of Box Hill VIC for winning the best cake competition across all branches. Neerim District Community Bank The wining cake from Box Hill, VIC Anglesea and Winchelsea Branches Beechworth & District Community Bank Belgrave Branch Devonport Branch Boronia Branch Burnine Branch Caulfield Park Branch Dee Why Branch Doncaster East Branch Edenhope Branch Epping, NSW Branch

5 Colour In Competition 2017 Thank you to everyone that participated in this years competition. Congratulations to the following winners. Category 5-8 years Utano, Clayton VIC Cattegory 9-11 years Jack, Lisarow NSW

6 Acknowledgments We acknowledge and thank all supporters and donors for their generous support. We apologise for any omissions. Bendigo Bank Branches Kincumber White Hills Acacia Ridge Kingston Willows Altona Community Brank Leongatha Winchelsea Anglesea Community Bank Lilydale Yarram Bairnsdale Lindfield Bayswater Maffra Other Beaufort Marcoola Community Bank Bradshaw Family Beaumaris Margaret St Brunswick West Early Learning Centre Beechworth Maroochydore Calvary Mater Newcastle Belgrave Marriott Waters CWA Neerim District Berwick Melton Domgjoni Family Bexley Montrose Gambrill Family Boonah Moonee Ponds Gold Coast University Hospital Hospital Boronia Mooroolbark Horkings Family Box Hill Morwell Irwinconsult Pty Ltd Brighton Mount Gambier Makaylie Donald Broadmeadows Mt Ommaney Mc Cann Family Bunyip Mudgeeraba Mrs Zena Guedelha Burnie Mukinbudin Neerim District Secondary College Business Banking Mundaring Neerim South Primary School Cannonvale & Proserpine Neerim District Community Bank Nunn Family Carrum Downs North Perth University of South Australia - Future Industries Institute Castletown Nubeena & Tasman Caulfield Park Ormond McKinnon Cheltenham Paradise Point Community Bank Cobram Pearcedale Cockatoo Pomona Cohuna Port Macquarie Collins St Portland Cowes Community Bank Preston Dee Why Probus Devonport Queenscliff Diamond Creek Community Bank Queenstown Community Bank Drouin Ringwood East Drouin & District Community Bank Robe & Districts Dunkeld Rockingham Eaglehawk Roleystone East Ivanhoe Community Bank Rosebud East Malvern Edenhope Elanora Ellenbrook Elsternwick Elwood Epping Fairfield Foster Freshwater Geelong Region Geelong West Geralton Grantville Halls Head Heidelberg Community Bank Hobart Holland Park Kangaroo Flat Kilmore Community Bank Kin Kora Sale Secret Harbour ShellHarbour Swan Hill Templestowe Village Toora Torquay Traralgon Trentham Tully Turramurra Turramurra Upwey Varsity Lakes Wallan Wangaratta Warburton Community Bank Warragul Warrnambool Wendouree Werribee Haemophilia Foundation Australia is committed to improving treatment and care for the bleeding disorders community through representation, advocacy, education and promotion of research.