The International ITP Alliance

The International ITP Alliance

A Decade of Achievement

A Global Voice for People Living with ITP

Building a Global Voice for ITP

The Alliance was established to create a unified global network of patient organisations supporting individuals and families affected by immune thrombocytopenia (ITP).

By the mid-2010s, national ITP charities and support groups had developed strong local foundations. However, leaders recognised that many of the challenges facing patients — access to treatment, research engagement, awareness, and advocacy — were shared internationally. A coordinated global approach was needed.

When patient organisations work together across borders, the impact extends far beyond any single country.

The Foundational Years (2015–2016)

Following ideas some time earlier from our friends in the Netherlands the vision of an ‘ITP Alliance’ was formalised during the European Haematology Association Congress in Copenhagen. Representatives from leading patient organisations agreed to create a structured international partnership.

The vision was clear:

To connect patient support groups worldwide in order to strengthen education, advocacy, and research collaboration across borders.

In September 2016, the first official Alliance meeting was held in Melksham, United Kingdom. Hosted by the ITP Support Association, the meeting welcomed representatives from Denmark, the Netherlands, Sweden, Finland, Italy, India, the United States and the UK. This meeting marked the formal launch of the International ITP Alliance as a collaborative global entity.

The first ITP International Alliance Meeting 2016

Image taken by Mervyn Morgan

Expansion and International Reach

Following its establishment, the Alliance expanded steadily. Over subsequent years, additional national and regional organisations joined, creating a truly global network spanning Europe, North America, Asia and Australasia.

By the early 2020s, more than 30 ITP patient support organisations from nearly 30 countries were participating in the Alliance. This growth reflected both the demand for collaboration and the strength of shared purpose among member groups.

This expansion has seen Alliance meetings in the USA, UK and Australia.

Purpose and Core Activities

The International ITP Alliance operates around five central pillars:

1. Education – Providing reliable, accessible information about ITP for patients, families and healthcare professionals.
2. Awareness – Coordinating international campaigns, including Global ITP Awareness Weekeach September, to improve recognition and understanding of ITP worldwide.
3. Advocacy – Amplifying the patient voice in policy discussions, regulatory engagement and global healthcare dialogue.
4. Collaboration – Sharing best practice between member organisations, supporting the development of new national groups, and strengthening governance standards.
5. Global Information Hub – Supporting the development of a central online resource, GlobalITP.org, which connects patients to information and national support organisations.

Regular meetings — often aligned with major international haematology congresses — allow Alliance members to coordinate messaging, share strategic priorities and strengthen global advocacy.

A Platform for the Patient Voice

One of the most significant achievements of the Alliance has been elevating patient experience into international clinical and research conversations. By working collectively, member organisations have strengthened engagement with researchers, clinicians and industry partners.

The Alliance demonstrates how patient-led organisations, when connected internationally, can:

• Improve consistency of information
• Share advocacy tools and resources
• Support emerging organisations in developing countries
• Increase the visibility of ITP as a rare autoimmune condition

Continuing the Mission

Today, the International ITP Alliance stands as the primary global collaboration of ITP patient organisations. Its continued growth reflects a shared commitment to education, research engagement and international solidarity.

Mervyn Morgan

UK and Ireland ITP Support Association

One of the founding members of the ITP International Alliance

The International ITP Alliance

A Decade of Achievement

A Global Voice for People Living with ITP

Building a Global Voice for ITP

The Alliance was established to create a unified global network of patient organisations supporting individuals and families affected by immune thrombocytopenia (ITP).

By the mid-2010s, national ITP charities and support groups had developed strong local foundations. However, leaders recognised that many of the challenges facing patients — access to treatment, research engagement, awareness, and advocacy — were shared internationally. A coordinated global approach was needed.

When patient organisations work together across borders, the impact extends far beyond any single country.

The Foundational Years (2015–2016)

Following ideas some time earlier from our friends in the Netherlands the vision of an ‘ITP Alliance’ was formalised during the European Haematology Association Congress in Copenhagen. Representatives from leading patient organisations agreed to create a structured international partnership.

The vision was clear:

To connect patient support groups worldwide in order to strengthen education, advocacy, and research collaboration across borders.

In September 2016, the first official Alliance meeting was held in Melksham, United Kingdom. Hosted by the ITP Support Association, the meeting welcomed representatives from Denmark, the Netherlands, Sweden, Finland, Italy, India, the United States and the UK. This meeting marked the formal launch of the International ITP Alliance as a collaborative global entity.

The first ITP International Alliance Meeting 2016

Image taken by Mervyn Morgan

Expansion and International Reach

Following its establishment, the Alliance expanded steadily. Over subsequent years, additional national and regional organisations joined, creating a truly global network spanning Europe, North America, Asia and Australasia.

By the early 2020s, more than 30 ITP patient support organisations from nearly 30 countries were participating in the Alliance. This growth reflected both the demand for collaboration and the strength of shared purpose among member groups.

This expansion has seen Alliance meetings in the USA, UK and Australia.

Purpose and Core Activities

The International ITP Alliance operates around five central pillars:

1. Education – Providing reliable, accessible information about ITP for patients, families and healthcare professionals.
2. Awareness – Coordinating international campaigns, including Global ITP Awareness Weekeach September, to improve recognition and understanding of ITP worldwide.
3. Advocacy – Amplifying the patient voice in policy discussions, regulatory engagement and global healthcare dialogue.
4. Collaboration – Sharing best practice between member organisations, supporting the development of new national groups, and strengthening governance standards.
5. Global Information Hub – Supporting the development of a central online resource, GlobalITP.org, which connects patients to information and national support organisations.

Regular meetings — often aligned with major international haematology congresses — allow Alliance members to coordinate messaging, share strategic priorities and strengthen global advocacy.

A Platform for the Patient Voice

One of the most significant achievements of the Alliance has been elevating patient experience into international clinical and research conversations. By working collectively, member organisations have strengthened engagement with researchers, clinicians and industry partners.

The Alliance demonstrates how patient-led organisations, when connected internationally, can:

• Improve consistency of information
• Share advocacy tools and resources
• Support emerging organisations in developing countries
• Increase the visibility of ITP as a rare autoimmune condition

Continuing the Mission

Today, the International ITP Alliance stands as the primary global collaboration of ITP patient organisations. Its continued growth reflects a shared commitment to education, research engagement and international solidarity.

Mervyn Morgan

UK and Ireland ITP Support Association

One of the founding members of the ITP International Alliance