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
London Asbestos Support Awareness Group
London Asbestos Support Awareness Group is committed to supporting sufferers of Mesothelioma, Asbestosis, Plural Thickening and other asbestos-related conditions with a person centred approach. The work we do at our non-profit charity is aimed at providing support in the way of one to one support, support groups (face to face & zoom), providing information and offering advice and support with the type of benefits you are entitled to including government and legal compensation schemes you may be entitled to. We also offer friendship groups for friends and family members to help build a social, supportive network. Our support workers are all DBS checked for extra peace of mind.
The Aarskog Foundation
The Aarskog Foundation is a global alliance of people living with Aarskog Syndrome (AS) X-Linked inherited. The Aarskog Foundation brings together National and International Aarskog Syndrome patients from around the world to create a global alliance of patients and families faced with common challenges derived from the uniqueness of this RARE Genetic condition. Addressing Aarskog Syndrome is vital in order for it to be recognised as a disability across all governing bodies to ensure all Aarskog patients have access to the same resources as any other person. Patients living with Aarskog Syndrome come together through The Aarskog Foundation in a structured environment to create an Aarskog community and a voice through advocacy and exchange experiences. To this end we aim to unite, expand and put Aarskog Syndrome on the agenda of organisations and institutions both in the UK and across the world.
Acute Leukemia Advocates Network (ALAN)
The [Acute Leukemia Advocates Network](https://acuteleuk.org/wp-content/uploads/2022/12/flyer_alan.pdf) (ALAN) is an independent global network of patient organisations, dedicated to changing outcomes of patients with acute leukemias by strengthening patient advocacy in that area. We aim to maximise the capacity of members within the network to allow us, together, to deliver tailored services to acute leukemia patients and carers on the national level. All whilst joining forces between organisations on the policy and research level across countries. ALAN is hosted under the umbrella of the [Leukemia Patient Advocates Foundation](https://www.lepaf.org/) (LePAF), a patient-led non-profit foundation based in Switzerland. As a foundation we connect leukemia patient organizations on all continents to strengthen advocacy work. The mission is to improve the lives and survival of patients affected by leukemia as well as their relatives by supporting leaders in providing help and support. ## OUR AIMS - Develop patient information and specific support for patients with acute leukemias and their carers in all countries - Strengthen patient organisations by sharing best practices and providing toolkits in patient advocacy - Create awareness about acute leukemias and how to better support leukemia patients - Advocate for better treatment, care & access to healthcare services - Improve education for healthcare professionals serving leukemia patients - Collaborate with other initiatives and stakeholders with similar goals
CML Support
Originally established in 1999 by two patients diagnosed with PH+ CML, the website was launched in April 2000 in order to reach a wider community of patients diagnosed with CML in order to provide support, advice and up to date information about the disease and its treatment options. We are the UK’s only charity with an exclusive focus on people diagnosed with Ph+ Chronic Myeloid Leukaemia and run by patients on a voluntary basis. Part of our support is on the psycho/social issues of the patient experience, a provision that is often lacking given the requirement for health professionals to address the complex clinical aspects of CML. We therefore see our role as an essential supplement to good professional health care. We also represent UK based CML patients during drug reimbursement appraisals at national, government-sponsored meetings as well as in all matters affecting treatment options that originate from the EU and its institutions. The CML Support Group takes an active role in a wide range of consultative bodies throughout the NHS.
Focus
Melanoma Focus is a national charity dedicated to providing help and support to melanoma patients and professionals as well as raising awareness of melanoma, the 5th most common cancer in the UK. For patients and their carers we provide the only Melanoma Helpline, run by experienced skin cancer nurses, specifically for anyone concerned about melanoma. Additionally, we have created a wide range of trusted patient information including the diagnosis and treatment of melanoma skin cancer and rare melanomas on our website and in booklet form. The Melanoma TrialFinder, a searchable resource has been designed to understand and locate potential clinical trials to discuss with a patient’s medical team.
Melanoma UK
At Melanoma UK, we believe it is vital to proactively use evidence in our advocacy work. An increasing proportion of patients are highly sophisticated in their research and understanding of evidence, and we are matching this movement. Examples include participation in health technology appraisal meetings (NICE and SMC), presenting clinically validated information on our website, authoring publications, engaging with our own panel of medical experts, and supporting patient-centric initiatives. Ultimately, all these initiatives are designed to benefit and support patients, which has been Melanoma UK's mission since its foundation.