"The 2018 conference officially opened tonight over dinner. So what have I been up to over the last couple of days? I have been attending meetings with colleagues from TS organisations around the world, including Australia, China, Hong Kong, Norway, New Zealand, US, Italy, Belgium to name a few!
“What has struck me is the passion with which these organisations represent people with TS, many organisations primarily run by family members and volunteers. The themes across the world are similar, trying to make sure people with TS get access to treatments and appropriate support.
“A total of 27 countries are represented here at the conference, which is phenomenal. As one parent I spoke to who was here with her 35-year-old daughter said, ‘How amazing that there are so many countries here today, when my daughter was diagnosed I thought it was just us!’
“I have already met some amazing families from around the world, but also had time this evening to meet with TSA parents Annemarie and Carole. We are comparing notes as between us want to cover as many of the sessions as possible over the next couple of days. It is also fantastic to see so many of our own specialists represented here, including Dr Chris Kingswood, Professor Julian Sampson and Professor Finbar O'Callaghan. I have attended a workshop on TAND (TSC associated neuropsychiatric disorders) and heard how this is being used in some clinics in the US.
“The programme proper starts tomorrow morning so we have a packed few days ahead. I have my flat shoes and note books to the ready!"