I would like to thank Novartis for making this storybook about immune thrombocytopenia (ITP).

The book is endorsed in the United Kingdom by the ITP Support Association.

I’m not a bubble-wrap boy! can help children and adults alike to understand what it feels like to live with ITP and describes the different types of treatment by using simple descriptions and compelling storytelling.

The way in which ITP is explained may also help children living with ITP feel more at ease when talking to their healthcare team. It may help them in explaining their symptoms and discussing treatment options available to them. ITP can present in different ways; therefore, different parts of the story may resonate with different children and allow them to share how they feel.

If you have a child either directly affected by ITP or living with a family member or friend affected by the condition, hopefully this book will help them to understand it better and feel more open about discussing ITP when they need to.

I hope you enjoy reading I’m not a bubble-wrap boy!

To download a PDF copy of I’m not a bubble-wrap boy click here >>>

Mervyn Morgan,
Chief Executive, ITP Support Association

Rare Disease Day February 28th 2021

For Rare Disease Day 2021 we have published several more Patient Stories, go to Latest Patient Stories

Read Dale's story, Hi, I was diagnosed about 16 years ago when I was 40 but probably had it quite a long time before that, I just never bothered going to see the doctor about the bruising. I do not do doctors.

Then there is My ITP Journey by Paul Stacey, My ITP Journey Like most people, I was accustomed to occasional headaches, especially stress-related episodes.

Angela Smith – An ITP Journey, My first encounter with ITP was in 1997.  I was in Northern India with my husband at the time.

If you would like to have your ITP story published on our website and in the Platelet Journal please email to This email address is being protected from spambots. You need JavaScript enabled to view it..

International ITP Alliance: Updates and upcoming events

Our good friend, Nancy Potthast, Director of Marketing at the Platelet Disorder Support Association in the United States of America has produced this update for globalITP.org which is the website for the ITP International Alliance.

First and foremost, I’d like to direct you all to the COVID-19 page that has been added to globalITP.org.  Here you will see a listing of helpful government websites from around the world, ITP & COVID-19 Support Resources and several other country-specific ITP & COVID-19 resources that have been supplied by our members.  If you see anything missing or have any additional items that would be helpful to add to this page, please let me know.  Several industry partners have expressed their admiration for the numerous comprehensive resources that our members have pulled together in such a short time.

Global ITP Awareness Week 21st to 25th September.

Immune Thrombocytopenia (ITP) is the most common autoimmune bleeding disorder affecting 10 times as many people as hemophilia, yet is unknown to most. 

Beginning 21st September  and ending on 25th September (Sport Purple for Platelets Day), ITP patient support organizations from around the world will observe the third annual Global ITP Awareness Week.  During this week, thousands of individuals and families around the world will join together to promote public awareness of this rare disorder and share their ITP Warrior stories in their fight against ITP.

Virgin Money Giving >>>

The ITP Support Association are pleased to announce that they have joined the fundraising and donation platform #VirginMoneyGiving, this platform is more widely recognised than our previous fundraising partner 'Wonderful' which is due to cease operations at the end of March.

ITP Support Association Patient Perception Survey 2020

Over the years the ITP Support Association has carried out many surveys covering the subject of Immune thrombocytopenia (ITP). Many of you would have been aware that the association has now established a growing network of Local ITP Groups around the UK. Much of the feedback from local groups has covered subjects ranging from treatment at GP Surgeries or Local Hospitals to fatigue and mental health issues resulting from ITP.

Initial results from the survey are now available:

Symptoms & Activity Results

Patient  Perception Survey Results

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.

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.

Influenza Vaccine and ITP

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.

My Success with MMF

 By Anthony Heard

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. 

Research and the ITP Support Association

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,

ITP Partnership Prospectus Published

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.

NICE have published their review of TPO-RA and have updated their approval for Romiplostim and Eltrombopag

Romiplostim is recommended as an option for treating chronic immune (idiopathic) thrombocytopenic purpura in adults, only if:

Neil Dudgeon on Pointless Celebrities

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.

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.

ITP Convention 2018 - Roundup

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 Association (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.

Speakers Presentation Slides from the 2018 ITP Support Association Convention

The Speakers Presentation slides from the recent ITP Support Annual Convention (held in Chester) are now availbale to view. All slides are in PDF format.

EUROPEAN HAEMATOLOGY ASSOCIATION

ANNUAL CONFERENCE

MADRID JUNE 22^nd – 25^th 2017

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.

Plasma Protein Therapeutics Association

14-15^th March 2017 Prague.

The Annual Meeting of this important association presented their 2 day conference covering the latest information relative to the extraction and purification of blood extracts for safe use by patients. The conference was attended by many physicians concerned with the treatment of rare diseases for which plasma products are so vital.

In his annual report to the conference, the chairman emphasised the problems of supplies encountered in various parts of the world and how they were tackling the problems. He also reported on the strategic goal to ensure the availability of safe, high quality plasma for fractionation. A further goal is the elimination of trade barriers and other discriminatory practices to achieve open access to plasma protein therapeutics globally.

ITP Pocket Log

We are pleased to announce that the Android version of the app is live! It is available to download – free of charge – from Google Play, use the search term “ITP symptom tracker”.

The IOS version has been available for some time from the Apple App Store. 

Everyone involved in the project would like to thank those who sent in ideas for the app after the outline of the project was shared at the ITP Convention last year.

Last year many of you may recall that a group of rare disease stakeholders came together to form a Priority Setting Partnership (PSP) to find out what matters to patients, carers and clinicians in the field of Bleeding Disorders. Some people experience problems with bleeding throughout their lives as the result of an inherited disorder such as haemophilia or von Willebrand disease. Others may have long-term problems due to an acquired problem such as immune thrombocytopenia and finally some people may have experienced problems only after childbirth or surgery.  To this end the PSP launched a survey 12 months ago asking for people to consider which questions they think are the most important for researchers to be asking.

Priority Setting Partnership (PSP)

Answering questions about Bleeding Disorders

A group of rare disease stakeholders have come together to form a Priority Setting Partnership (PSP) to find out what matters to patients, carers and clinicians in the field of Bleeding Disorders. Some people experience problems with bleeding throughout their lives as the result of an inherited disorder such as haemophilia or von Willebrand disease. Others may have long-term problems due to an acquired problem such as immune thrombocytopenia and finally some people may have experienced problems only after childbirth or surgery. We are interested in all these problems.

The 20th ITP Convention 2017

Royal Society of Medicine, London.

The 13th is considered by many to be an unlucky number so I am sure, some had misgivings about the date chosen for the annual convention for 2017. They need not have worried.