The International ITP Alliance is made up of dedicated patient organisations from around the world, each working tirelessly to support those affected by Immune Thrombocytopenia (ITP).
But who are the people behind these organisations? What drives them, and what do they hope for the future of the ITP community?
This series introduces you to the incredible individuals leading the charge in their respective countries. Through a set of thoughtful questions, we explore their connections to ITP, the most rewarding aspects of their work, and even a few fun facts—because advocacy is about passion but also people.
Let’s start by meeting Mieke Budel-Mobach.
Name
Organisation
How are you connected to ITP?
Describe yourself in 3 words.
The Netherlands
ITP Patiëntenvereniging Nederland
I’m a patient.
Honest, responsible, sociable
How long have you been working in your organisation?
Immediately after being diagnosed with ITP in 2008, I became a member of the patient association. I occasionally did some volunteer work, and in 2018, I joined the board. My portfolio within the board is PR and communication. Since 2020, I have been the co-chair of the patient association.
What’s the most rewarding part of working with your charity?
I believe it is important to inform people about ITP, whether they are patients, family members, or healthcare providers. I notice that people really appreciate the information our association provides. That makes me feel good, and I’m happy to contribute to that effort. In general, an ITP patient does not know others with ITP. Thanks to peer support, which the association organizes, ITP patients also learn from each other. This applies to me as well. Additionally, I find the connections with the International ITP Alliance to be very valuable.
What’s your greatest hope for people living with ITP (except a cure)?
I believe it’s important that ITP patients don’t let the disease influence them too much. Of course, it can be challenging at times, but I think it’s crucial to focus on what is still possible. I hope they (we) succeed in doing that.
Coffee or Tea?
Describe your perfect day.
If you could have a superpower, what would you choose?
Coffee
I love spending the day with family and/or friends. I enjoy dining out and traveling, but I can also take great pleasure in our home and the garden.
Never get tired and always be able to keep going with plenty of energy.
