I’m not a bubble-wrap boy - storybook to help children understand ITP

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

Editable Event Poster 60x80cm

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

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.

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Global ITP Awareness Week Scheduled for Week of 21st September.

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.

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ITP Support Association Patient Perception Survey 2020 - Initial Results

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


Press Release - Grifols to launch TAVLESSE® in Europe and Turkey

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.

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