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.