AHCDO update

Megan Sarson

Dr Megan Sarson is the Project Officer at Australian Haemophilia Centre Directors’ Organisation (AHCDO)

AHCDO update

After a 2 year break, I have returned to my role at Australian Haemophilia Centre Directors’ Organisation (AHCDO). Although many things have remained the same over this period, it’s interesting to see what has changed. There are a few new treatment products available, the Australian Bleeding Disorders Registry (ABDR) has grown and there appears to be real advances in gene therapy. HFA has a new office (although I’m sure it doesn’t feel new to the HFA staff anymore as they moved in just after I left) and there’s a new General Manager at the National Blood Authority.

I spent most of my time away in Ethiopia where I have been fortunate enough in the past to help establish and work with members of the Ethiopian Hemophilia Society (EHS). Established in 2008 and gaining full membership of the World Federation of Hemophilia (WFH) during the Congress in Melbourne in 2014, the EHS is making great advances for its membership. From a base line of only having fresh frozen plasma for treatment and not being able to confirm a clinical diagnosis, the Society now has some supplies of products supplied through the successful twinning program with the Chapel Hill Hemophilia Treatment Center (USA), has laboratory reagents for testing, maintains a simple database of patients, has regular training workshops facilitated by WFH and has opened chapters in provincial cities.  There is even talk on the grapevine that the government may provide funds for limited prophylaxis sometime in the not too distant future.

The EHS also celebrates World Haemophilia Day (WHD) each April. In 2015 there was a drive to promote the Blood Bank and encourage donations, whilst in 2016 we held a seminar in Addis Ababa with a theme of encouraging youth. Special awards were made to members who had recently started tertiary education – it was hoped that this would encourage younger boys to continue with their education. We were also able to congratulate Friaoli Ayele who was the recipient of a travel grant to attend the WFH Congress in Orlando. Friaoli was subsequently awarded another grant to attend the WFH Youth Leadership Workshop in Barcelona however was unable to obtain a visa in time.

 There are scarce dollars (or Birr as the local currency is known) to support the work of the EHS so I also undertook some fundraising while I was travelling in the UK. My husband and I cycled over 1,700km in 20 days from Land’s End to John O’Groats – the length of the Great Britain – raising over $1,300 (some of which also went to HFA) which will help EHS with the costs for this year’s World Haemophilia Day celebrations.

Ethiopian Hemophilia Society World Haemophilia Day 2016