Helping patients find information when they are discovering their disease
Join our members in finding the resources and support you need to navigate your health journey.
Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
CML Support
CML Support is a UK-based charity focused on chronic myeloid leukemia (CML). The site provides patient information, access to clinical trials, specialist centres, and an online community/forum. It organizes resources through sections such as Patient info, About us, and Organisations (a directory of organisations). The presence of a Facebook page indicates active patient/community engagement. The site menu suggests emphasis on diagnosis guidance, testing, treatments, available treatments, clinician-centre resources, and patient advocacy through its organisational and patient-information content. CML Support is a comprehensive patient support community for Chronic Myeloid Leukaemia (CML). It provides educational resources, patient information, clinical trials, specialist centres, and support networks. The organization aims to empower patients with knowledge about CML, facilitate access to treatments and clinical research, and offer emotional and peer support. It also engages in advocacy and collaborates with healthcare professionals to improve patient care. The site features articles, videos, templates, and a forum for community interaction. CML Support is committed to providing up-to-date, accurate information and fostering a supportive environment for individuals living with CML.
DKMS Foundation
DKMS is a patient-focused organization dedicated to fighting blood cancer through stem cell donation, patient support, and advocacy. It operates in the UK and collaborates with various partners to facilitate blood stem cell transplants, provide patient support services, and promote awareness campaigns. The organization maintains a registry of donors, offers educational resources, and engages in research collaborations to improve treatment outcomes. DKMS also advocates for policy changes to enhance donor registration and access to treatments. It is involved in clinical trial support and works with regulatory bodies to ensure compliance and advance medical research. The organization is committed to increasing diversity in donor registries and supporting patients throughout their treatment journey.
Action for XP
Action for XP is a UK-registered charity focused on Xeroderma pigmentosum (XP). The organization provides patient and family support, awareness, education, resources, and advocacy related to XP. It offers project-based initiatives and several support and information hubs to assist people affected by XP, including Project Breakaway and Little Ted, as well as services such as Supporting You, the Action Advice Hub, and the Schools Hub. The charity aims to connect the XP community, raise awareness, share XP-related information, and provide accessible resources and outreach through its website and programs. Headquarters are listed in Aberdeenshire, United Kingdom, with charity registration details noted (Charity No SC045465). Action for XP is a charity dedicated to supporting individuals and families affected by Xeroderma Pigmentosum (XP). The organization operates across the UK and internationally, providing free services such as UV protection guidance, protective equipment, counselling, and family support. They organize community events, awareness campaigns, and collaborate with medical professionals and industry partners to advance research and improve quality of life for those with XP. The charity also engages in educational initiatives, advocacy, and fundraising activities to sustain and expand their support network. They have a strong focus on patient-centered care, education, and raising awareness about XP and related rare genetic conditions.
AMMF
AMMF (The Alan Morement Memorial Fund) is a UK-based charity dedicated to supporting research, raising awareness, and providing support for patients with cholangiocarcinoma (CCA). It develops comprehensive guidelines for diagnosis and treatment, funds research projects, and offers educational resources for patients and healthcare professionals. AMMF collaborates with international centers and advocacy groups to improve access to care and promote clinical research. The organization also engages in policy advocacy, hosts conferences, and maintains a network of advisors and experts in the field of liver and biliary cancers.
OnkoMajak
Our mission is to raise the awareness of the general and specialist public about oncological diseases, their prevention, early diagnosis and treatment options. The goal is an informed and proactive public. We strive to reduce the incidence and mortality of oncological diseases not only through interactive educational experiences within the Gut Tour and Healthy Lungs roadshows. The domain of the roadshow is an inflatable model of the colon and lungs, which helps to understand the risks and causes of various diseases.
HBA Support
We are a new and growing, patient-focused organisation. Hereditary Brain Aneurysm Support (HBA Support) aims to support and inform people and families living with familial brain aneurysms or those who may be at risk. We will also raise awareness of the condition as a rare condition to improve and save lives. Working with families and clinicians alike, we will help advocate for improved support, better care and more research into this hereditary condition. HBA Support was set up in 2020 by Rebecca and Emma Middleton. After losing their mum and grandmother to brain aneurysms, Rebecca went through her own battle for diagnosis and subsequent treatment for a right MCA brain aneurysm.