First meeting of the Maesteg South Wales Local ITP Support Group

Monday 20th Jan saw the first meeting of the new Maesteg South Wales Local ITP Support Group, a lovely venue with some stunning scenery of the valleys. many thanks to Wendy Tucker for organising the venue. The next meeting in Wales will be the Pontyclun ITP Local Support Meeting on Monday 23rd March 2020 (2.00pm to 4.00pm) at the Bethal Baptist Church Centre, Heol Miskin, Pontyclun, Rhondda Cynon Taff, CF72 9AJ

First Meeting of the Broomfield Hospital ITP Support Group

A huge thankyou to Dr Pavel P Kotoucek and his team at the Broomfield Hospital, Chelmsford for making all who attended the first meeting of their ITP Local Support Group welcome. We would also like to thank friend of the ITP Support Association and now one of our advisors ITP Nurse Consultant Louise Taylor for her support.

Grifols to launch TAVLESSE^® in Europe and Turkey to continue reinforcing its commercial strategy and commitment to patients

European Commission has approved TAVLESSE^® (fostamatinib) for the treatment of chronic immune thrombocytopenia (ITP) in adult patients who are refractory to other treatments.

Grifols gained exclusive rights to TAVLESSE^® in ITP and other pipeline indications in Europe and Turkey as a result of the Collaboration and License Agreement reached with Rigel Pharmaceuticals in January 2019.

Worcester ITP Support Group - First Meeting

The first meeting of the new Worcester ITP Support Group took place on Fri 10th Jan. A big thank you to Jo Marlow. The next Worcester meeting will be in April (Date TBC shortly) Also thanks to Waitrose for making their Community Room available for the meeting. #ITPAware

Update on the UK Adult ITP Registry

by Haroon Miah, Research Coordinator / Data Manager at the Royal London Hospital

In the last year we have added 19 new sites to the 74 hospitals that already report their new ITP patients to the Registry. This is 69% of the acute non-specialist Trusts in the UK (based on 135 acute non-specialist Trusts in the UK). We have now recruited over 3780 patients and have clinical information on virtually all and DNA stored on over half. It has been estimated that over 2,000 patients are needed in any Registry to detect worthwhile trends and in a disease as diverse as ITP this may be more.  We have however published some very important drug studies, as mentioned in the June edition of the Platelet. We have also in the past shown the major impact that steroid treatment has on patients and identified the increased risk of thrombosis in ITP despite the low platelet counts.  We were also one of the first to show the impact of fatigue on quality of life in a study we performed in conjunction with the ITP Association. 

ITP AWARENESS - Looking forward to RARE DISEASE DAY 2020

By Anthony Heard

The annual ITP September Awareness Campaign has now come to a close after a wonderful purple tinged month. With contributions from all corners of the globe we have once again drawn attention to ITP in spectacular fashion.

A huge thank you goes to every single person who took even the smallest action to spread awareness of our enigmatic condition. Whether it be writing a blog entry, an article, Tweeting or Facebooking about it or sporting Purple for Platelets, we have all done a fabulous job.

INTERNATIONAL UPDATE for 2019

By Derek Elston, Trustee, ITP Support Association

The last twelve months have been extremely busy with the association being involved in representing ITP patients not only within the United Kingdom, but also within Europe and beyond.

Whilst much of the involvement has been reported in previous editions of the Platelet, a recap of the year illustrates what is and has been happening around the world with which we have been directly associated. The adage of the world becoming smaller is well known, but it is certainly true with regard to ITP. With the advent of new drugs from various pharmaceutical companies in the pipeline, life is becoming very interesting.