Charities and support groups

Sources of support on your cTTP journey

Whether you personally have cTTP or are a caregiver for someone who does, there may be moments where you need support. In the digital age, help is often only a mouse click away.

Charity and support group websites

Charities and support groups, such as the ones listed below, can provide a reassuring and understanding environment for you to share your experiences and any challenges you might be facing.¹ Speaking with compassionate people in a similar situation to you might help you feel part of a community with the same goal. In addition, charities may be able to provide you with information about cTTP and offer practical support – or help guide you to services that can.

• TTPNetwork is a UK charity that provides advocacy, information and support for people TTP (Thrombotic Thrombocytopenic Purpura) and their families. https://www.ttpnetwork.org.uk/
• The Anthonia Oyindamola Folakemi Afelumo Coshare (AOFAC) Foundation was set up in 2013 on the anniversary of 18-year-old Anthonia’s passing from TTP. Based in the UK, it helps those affected by TTP and their families, and friends manage their experience with TTP. https://www.aofacfoundation.org
• The Answering TTP foundation is a Canadian advocacy and support group for people living with, caring for or treating TTP. https://www.answeringttp.org
• Carers Trust is a UK charity network specializing in the support and wellbeing of unpaid carers. https://carers.org/
• Carers UK helps provide guidance to carers and support their wellbeing. https://www.carersuk.org
• The Parent Carer Foundation helps support parents and caregivers of those with chronic conditions. https://parentcarefoundationorg.co.uk
• The National Association of Thrombotic Thrombocytopenic Purpura is a patient organization based in Italy. https://www.anptt.org/

TTP information

Information about support networks may come in the form of websites and blogs. These may be helpful in terms of providing general information and insights on lived experiences of people affected by the disease. When visiting websites for information, be sure to use reputable sources such as the ones below. When reading blogs about peoples’ experiences with cTTP, you might find you identify with some of the challenges or gain new insights on how to face them.

Please note, this list is not intended to be exhaustive, and the sources are not intended to be considered as recommendations but merely signposting. Some of the links below may be private and require registration:

• NORD was the first national (US) nonprofit to represent all individuals and families affected by rare diseases. It provides information and financial support in some cases, for example when traveling to a treatment center. It also holds events for the 30 million people living with rare diseases, as well as for their caregivers and families. https://rarediseases.org/
• Global Genes is – as its name suggests – a global, non-profit dedicated to the education and empowerment for members of the rare disease community. https://globalgenes.org/
• The National Library of Medicine (NLM) is the world's largest medical library and is operated by the US government. It is an excellent resource for up-to-date cTTP information. https://www.ncbi.nlm.nih.gov/pmc/?term=cTTP
• GARD provides reliable, detailed and easy-to-understand information about genetic and rare diseases. https://rarediseases.info.nih.gov/diseases/9430/congenital-thrombotic-thrombocytopenic-purpura
• Orphanet is a resource which provides high-quality information on rare diseases. https://www.orpha.net/en/disease/detail/93583
• The Answering TTP Foundation is a US-based organization that arranges virtual support groups, connection programs, events and education to help connect and support the TTP community. https://www.answeringttp.org/get-help/support-programs/local-support-groups
• Karger, a leading scientific publisher, has produced an easy-to-understand series on TTP. https://thewaitingroom.karger.com/tell-me-about/types-and-symptoms-of-thrombotic-thrombocytopenic-purpura-ttp/
• The Ree Wynn Foundation was set up by Vicki in memory of her daughter Reeshemah who lost her life to TTP. It provides education and promotes awareness of TTP. https://reewynn.org/
• EURORDIS is a collective of European patient organizations supporting many rare diseases. https://www.eurordis.org/
• The Britt Balser Foundation is dedicated to the memory of 12-year-old Britt Balser who had TTP. It is a public charity dedicated to raising funds to advance TTP treatment through events such as concerts. The charity also has a section where people with TTP tell of their experiences. https://www.brittbalserfoundation.com/
• Some patient support groups have active communities on social networks like Facebook.