News from the TSSS
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The Turner Syndrome International Group [TSINT] are delighted to officially launch our new website to the Turner Syndrome Community Worldwide.
Turner Syndrome International Group [TSINT] offers an opportunity for Turner Syndrome Groups throughout the world to share information, good practice and literature with each other. Our aim is to improve knowledge and understanding about Turner Syndrome worldwide.
TSINT was formed at the International Conference hosted in Japan in November 2012. A meeting was held with all International Group Leaders and it was decided that we would set up this website to improve communication between groups. We are very much in our infancy at the moment it is our intention to work together and support each other by sharing information, knowledge and experience worldwide.
TSINT enjoys a good relationship with relevant specialists worldwide to promote a good basis for education and management of Turner Syndrome. We are forming an International Advisory Board details will be available on the website soon.
We are supporting Mexico as the host of the 9th International Conference in Cancun, Mexico in May 2016. Details will go on the website as soon as they become available.
We will manage the bid process for the 10th International Conference in 2019 or 2020.
Any group wishing to be part of our group should send contact details and a brief description of their group to be put on the website.
All groups are welcome e-mail Arlene Smyth – President of TSINT with the details This email address is being protected from spambots. You need JavaScript enabled to view it..
Please visit the website at http://tsint.org/
Kindly supported by Novo Nordisk through an educational grant Aug 2014.
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Genetic Disorders UK and the team at Net mums www.netmums.com, the UK’s fastest-growing online parenting organisation, are carrying out research with parents of children who have a genetic disorder to gauge how supported and connected they feel.
The results gathered will be made public in the national media in the lead-up to Jeans for Genes Day to help raise awareness for families affected by genetic disorders.
We know you have a lot on your plate but we would really like as many families with a genetic disorder or disability to take part in this survey and it won’t take more than a few minutes to complete. You will find the survey at: www.surveymonkey.com/s/youandyourchild
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PatientView and Health 2.0 are undertaking a short survey. It aims to find out how what patients and carers REALLY WANT from health apps.
This survey is an opportunity for patients and carers to tell app developers how health apps can be improved to better meet the needs of patients and carers.
- The survey is open to anybody who is living with illnesses or conditions that last many years (or even a lifetime), and to the carers of people living with illnesses or conditions that last many years (or even a lifetime).
- The survey is COMPLETELY ANONYMOUS AND CONFIDENTIAL.
- The results of the survey will be made public on November 10th-11th 2014 at the Health 2.0 conference in London, which attracts about 500 delegates. The 2014 conference is focusing on engaging the entrepreneurs who are behind the development of health apps.
- All survey participants can have a copy of the results emailed to them, if they wish.
WHEN THIS SURVEY WILL CLOSE
To share your views, please make sure you reply by Friday, 24th October 2014.
TO TAKE PART, PLEASE CLICK ON THE LINK BELOW:
LINK: Survey on what patients and carers WANT from health apps
Thank you.
If you have any questions about this study, please contact:
Dr Alexandra Wyke of PatientView
Tel: ++44-(0)1547-520-965
E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.