There are lots of ways you can get involved and support TTPNetwork!
Research is ongoing to discover more about TTP and related conditions, as well as treatments for TTP and different ways of optimising treatment.
There is a national TTP Registry in England. Through the registry data is collected which helps to inform future studies and treatment. You can take part in the TTP Registry if you wish to. Click below to find out more.
If you would like to find out more or get involved in helping with research, click the button below.
If you have had TTP for a long time, or have been diagnosed more recently you may want to talk to someone about life with TTP or how your treatment is going.
Alternatively, you may just want to talk to someone who can identify with your rare condition so you can feel less isolated. Perhaps you were diagnosed a few years ago and now want to speak to someone who understands what it is like living with TTP. Each TTP patient has different needs and although treatments may differ the underlying feelings are often the same.
We also receive Buddy requests from family members who wish to speak to other families dealing with a loved ones diagnosis.
Ideally your TTP buddy would be located close to where you live or where you have treatment so if you feel like you both want to meet for a coffee it would be possible, however, as TTP is a rare condition the chances are it would be someone you could speak with on the phone, email or text as and when it suits both of you.
If you would like to be put in touch with a TTP buddy please use the contact form button on this page and we will do our best to match you with someone suitable.
Please do remember that TTP buddies are volunteers, most of whom have no formal counselling or medical training but do have some lived experience of TTP and can identify with what you are going through.
Although TTPNetwork will make the initial introduction we do not take responsibility for any ongoing contact between buddies.
TTP Network is a patient-led organisation run by volunteers, many of whom have TTP.
There are many areas of work which you as a patient, family member, friend, medical practitioner or interested party could take part with. This could include sharing the word about TTP and the TTPNetwork, being a Trustee, helping us on our social media sites, fundraising or being a TTP Buddy. A TTP buddy is a patient or family member offers to link up and support to another TTP patient or family.
If you have some time and skills that you feel would be valuable to the network please get in touch.
We have an active Facebook Group. It is a private space (as private as the internet can be!) where patients and family of patients can share their experience.
It is a fantastic way to meet others who’s lives have been affected by TTP. Our online community is growing with over 900 active members and many discussions happening right now!
Our Facebook groups provides a more personal, interactive environment where you can:
Contact us for help or support
TTPNetwork is a patient and volunteer led organisation. We rely on donations and grants in order to continue providing support and advocacy for TTP patients and families
There are many ways you can help
We operate a small shop at the request of patients who like to show their support for the work we do.
Our shop is available to those in the UK and Eire.
Follow the link below to enter our shop.
