A second Club meeting for the Osteogenesis Imperfecta (OI) Community in Vietnam - May 2013

A second Club meeting for the Osteogenesis Imperfecta (OI) Community in Vietnam - May 2013

CLAN would like to start by acknowledging the contribution of several Australians who travelled to Vietnam to support this meeting. In particular, A/Prof Craig Munns, Dr Kristi Jones and Occupational Therapist, Helena Young, all from The Children’s Hospital at Westmead, Sydney, Australia and Mrs Ann Robinson, an endocrine nurse practitioner from Queensland. The support of these volunteers was invaluable, and CLAN could not do the work we do without your help!

The OI 2013 Project started first with a visit to Children’s Hospital 2 (CH2) in Ho Chi Minh City, where Assoc Prof Munns working with Dr Quynh from CH2 discussed some of the more challenging aspects of Osteogenesis Imperfecta (OI) management, and in particular discussed a few patients in detail. Education days for the medical staff were then held at Children’s Hospital 2 in HCMC on 3rd May and over 80 health professionals attended for training.

From HCMC the team travelled to Hanoi, and began with a training day for health professionals at the National Hospital Paediatrics (NHP) in Hanoi on the 8th May. Many health professionals attended, and were keen to interact with the visiting specialists to learn more about current multi-disciplinary management models of OI in Australia.

The second ever OI Club (Support Group) meeting in Vietnam was held on the 9th May at NHP and around 75 families attended. The OI Club meeting was scheduled for a date near 6 May deliberately, to help families connect with the international Wishbone Day movement, a day of awareness held on 6 May every year.

Families and their children attended from all over Vietnam to learn about the management of OI and how they can best help their children. The day commenced with the screening of a music video of a powerful song about OI recorded by Ms Nguyen Phuong Anh, a young woman who is living a full and active life with OI in Vietnam (music video below). The song was written by Mrs Jessamine Rhea, a close friend of the Filippino OI Support Group Network, and the words offer a lot of encouragement and optimism to those living with OI. Families in Vietnam knew Phuong Anh from her appearance on Vietnam's Got Talent, and were thrilled to see her performing a song just for them!

Another video screened for families was one developed from photos of the first OI Club meeting which was held in November 2011 (link  here) and the many children in the audience delighted in seeing themselves on the screen. CLAN is very fortunate to have the support of media company C3Vietnam who produced these videos and also filmed the recent meeting. Dr Craig Munns and Helena Young presented at the meeting and this was followed by a lively Q and A session.

Families at the OI Club meeting enjoyed socializing over lunch. Later in the day the OI Club executive members were elected and there was an opportunity for discussion of the issues faced by families. We are all hopeful that the life changing medications, bisphosphonates, will soon be available to children with OI in Vietnam. The media also attended the meeting giving much needed publicity to the lack of availability of medication for these children.

Huge thanks to everyone who made this day possible - especially the many families who travelled such long distances to attend.

If you would like to make a donation to support the work of CLAN and the OI Community of Vietnam please donate here: