Novartis UK have published an excellent page on their website containing some great #ITPPatientResources, a series of videos, details of the ITP Pocket Log and advice about the ITP Emotional Burden. The videos and ITP Pocket Log were developed in collaboration with the @ITPSupportAssoc To view the Novartis website and the ITP Page go to
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.
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
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.
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.
Join us for a fascinating evening of short, patient-friendly talks on the latest research in ITP
About this Event
Do you, a friend, or a relative have immune thrombocytopaenia (ITP)?
Join us for the third in our series of educational patient research evenings this time focusing on ITP caused by the immune system attacking platelets. The condition can result in a low platelet count and bleeding.
Please note that this general advice on the influenza vaccine has been written by one of the Association's medical advisors, Dr John Grainger, but it does not replace any advice given to you by your consultant or GP who knows you and your ITP.
The influenza vaccine has been linked to the development of ITP in a small number of adults and may cause a dip in platelet counts in children or adults receiving the vaccine. However, the risks are higher for children (or adults) who are unvaccinated and develop influenza.
Newly diagnosed ITP (Within 3 months of diagnosis) My preference is to avoid the ‘flu vaccine unless there are other co-existing medical conditions, such as cardiac disease or asthma.
As I approach my thirteenth ITP Birthday on July 28th, I can reflect upon plenty of incidents during ITP years. It hasn’t been a picnic by any means. I have been through the Prednisolone ringer five times, Rituximab twice and a horrible week or so with Azathioprine (I could not tolerate it all and withdrew from it within ten days).
I am one of those ITP sufferers who have been fortunate to respond well to Prednisolone and Rituximab. With the steroid, I have obtained about 6 months remission every time that I went on it and with Rituximab, I got about 2 years and 8 months remission both times that I had it. But in February 2016, I relapsed from the Rituximab remission that I had enjoyed since Summer 2013.
So, at that point my specialist suggested that we try Mycophenolate Mofetil (MMF). He was reluctant for me to undergo a third round of Rituximab treatment. Although I had responded well to it twice already (2010 & 2013). He felt that the long-term damage that it could potentially do to my immune system was not worth the risk. More long stints with Prednisolone were also ruled out. Although I responded well to it, the problems that it caused every time that I had used it on 5 occasions already, would just not be bearable again.
The Association is a registered charity whose aims are to promote and improve the general welfare of patients and their families. It does this in a number of ways, by providing written information, support through the website, access to experts, mentors and other patients, and through the Conventions and small group meetings which allow patients to meet others with similar problems to discuss and share their issues.
The Association also has an important role highlighting the disease regionally, nationally and internationally through links with Societies and specialist groups, by organising medical seminars and by communicating with the regulators, commissioners and various NHS bodies. We have also been active in linking in with other patient groups and have strong links with the PDSA in the States and with a number of the European groups. rough the latter we have been pushing recognition of ITP, as a bleeding disorder, on a wider scale.
June 25, 2019 -Approval Based on Positive Efficacy and Safety Data from Two Phase 3 Clinical Trials- -Company Intends to Partner for the European Commercialization of DOPTELETDURHAM,N.C., June 25, 2019 (GLOBE NEWSWIRE) -- Dova Pharmaceuticals, Inc. (NASDAQ: DOVA), a pharmaceutical company focused on acquiring, developing and commercializing drug candidates for diseases where there is a high unmet need,
We are pleased to announce the publication of the ITP Support Associations Partnership Prospectus for 2019/20. This document helps to explain the tremendous reach of the Association (the only National ITP Patient Support Charity) and the opportunities that are available for collaboration with potential partners such as sponsorship for items such as the Website, Platelet newsletter and our Booklets. In addition, there are opportunities for partners to work with us at events such as our Annual Convention.
A big thank you to friend of the ITP Support Association Neil Dudgeon, who with partner Annette Badland reached the final only to miss out on the jackpot by 1 point. Neil dedicated his £250 winnings to the ITP Support Association.
We recently held the first Local ITP Group Meeting of the year. The meeting was held in the Ancient Stannary Town of Ashburton in the heart of the South Devon countryside, close to the edge of Dartmoor. We must say a big thankyou to member of the ITP Support Association, Sally Rhodes, who stepped forward and volunteered to organise a suitable venue for the meeting.
A new data protection law (GDPR) has now been introduced in the United Kingdom. Therefore we have published a new Privacy Notice to show how we use and protect your information. When joining or renewing your membership of the ITP Support Association online there are additional options to chose regarding how we contact you within your membership profile.
BMA Foundation for Medical Research – grant winners 2017
Three of the UK's leading ITP specialists, have received grants from the BMA Jon Moulton Award to further their research into ITP. Dr Nichola Cooper, Dr Charlotte Bradbury and Dr Quentin Hill, all three directors of ITP Clinical Centres. Details of the award can be found via this link, BMA Foundation once on the page click on the J Moulton tab.
We recently held our Annual ITP Patients Convention, this time, following requests from members we took the Convention to the beautiful City of Chester and its historic racecourse in the North West of the Country.
Speakers Presentation Slides from the 2018 ITP International Global Alliance Meeting
The 2018 ITP International Global Alliance meeting was hosted by the ITP Support Association UK and organised by the ITP Support Assocation (United Kingdom) and the Platelet Disorder Support Association (USA), the meeting was held in Chester.
Speakers presetnation slides will be posted here as they become availbale. All slides are in PDF format. The Presentation Slides are the copyright of the individual speakers, the slides are for viewing only, copying and printing is restricted.
Derek Elston (Trustee,) EHA Patient Advocate Workgroup Member
Near forty degrees of heat is not the most desirable temperature in which to attend any conference, but thank goodness, the heat in Spain is somewhat dryer than here in the UK and the conference centre was air conditioned.
The conference was held at the IFEMA conference centre located on the outskirts of Madrid approx. 5 mins from the international airport.
Derek Elston, trustee of the ITP Support Association, tells PharmaTimes about his experiences of being diagnosed and living with the rare bleeding disorder
How were you diagnosed with idiopathic thrombocytopenic purpura and what were your symptoms?
I was first diagnosed in 1993 with ITP after working in the Far East for 14 months. At the end I was fairly shattered both with the intensity of the work and commuting regularly. After about four weeks, I decided to visit the doctor. He took a sample of blood.
Some of the world’s largest research funders and NGOs today agreed to adopt the WHO’s strong standards on clinical trial transparency. This means all clinical trials they fund or support will be registered and the results reported.
In a joint statement, nine major funders including Médecins Sans Frontières, the Bill & Melinda Gates Foundation, the Indian Council of Medical Research, the Norwegian Research Council, the UK Medical Research Council and the Wellcome Trust committed to develop and implement policies that require all trials they fund, co-fund, sponsor or support to be registered in a publicly-available register. They also agreed that all trial results would be disclosed within specified timeframes on the register or by publication in a scientific journal.