Our Story
Danielle was diagnosed with Immune Thrombocytopenia in June 2015. Looking and feeling healthy, she thought that she just ‘bruised like a peach’ and that, along with her other symptoms from over the years were considered normal. Then in June 2015, after a trip to the hospital with what she thought was the flu, a full blood count identified Danielle as having ITP. Luckily, her diagnosis was made under the trusty skills of haematologist and one of Australia’s leading experts in ITP, Dr Robert Bird.
At the end of July, I was invited to attend the 2019 Global ITP Alliance meeting which was held in Washington DC. As the representative of ITP Australia, and one of the newest members of the Global Alliance, I was welcomed and learnt a lot from the other organisations that span the globe.
The 2019 meeting was attended by a number of representatives from various countries including Argentine, Brazil, China, Denmark, Finland, Italy, Netherlands, New Zealand, United Kingdom and the United State of America. There are more than 30 countries now included in the Alliance all working together to build awareness of ITP in their respective countries, providing patient support and advocacy.
The meeting was a great platform to share what each organisation is doing in each country, with some of the organisations running for more than 20 years. We discussed topics around sharing information, funding both in each country and potentially at an international level, patient advocacy, emerging treatments, patient quality of life and much more.
We presented as a group to a number of industry stakeholders and discussed the challenges we faced both locally and internationally regarding funding, treatments and resources, as all organisations are run and managed by volunteers, with the vast majority being touched by ITP in some form.
After a full day of meetings and discussions, we came together as a group and met with a number of the Medical Advisory Board for the PDSA.org and had a chance to share our individual ITP stories and get to know each other a little better.
Global ITP Alliance – 2019 PDSA Conference
After the formal Global Alliance meeting had been held, we were invited to attend the 2019 ITP Conference. The 2019 Conference was the largest to date and was a wealth of information.
We also managed to let our hair down a little as we enjoyed the time we had together.
In the coming months, ITP Australia, with the assistance of and in conjunction with the Global ITP Alliance, will be bringing forward a number of new initiatives and building on the work already completed.
If you’re interested in finding out more about the Global ITP Alliance, head to the website here.
If you’d like to find out more about the 2019 PDSA Conference, head to their website.