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
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.
Max Appeal
Resource Library page for Max Appeal. Provides access to all of Max Appeal's literature, professional papers, and useful web pages and links around the world. Encourages participation in or understanding current research into 22q; directs visitors to Library, Research, and Useful Links sections to learn about 22q and related resources.
IPOPI
IPOPI is an international non-profit association registered in Belgium; it aims to improve the lives of people with primary immunodeficiencies (PIDs) worldwide. The organization operates through a strategic plan and network of member organizations to advocate for early diagnosis and optimal care, PID awareness, and stakeholder collaboration. IPOPI conducts work on PID-related awareness, early diagnosis and care, NMO support within NMOs, and provides patient-focused resources and tools (Leaflets, publications, and the PID Life Index). It maintains corporate sponsor relationships and programmatic initiatives such as early diagnosis and care, PID awareness, and NMO-related support. IPOPI (International Patient Organisation for Primary Immunodeficiency) is an organization dedicated to improving the lives of patients with primary immunodeficiencies worldwide. It engages in advocacy, education, and support activities, collaborates with stakeholders, and promotes awareness and early diagnosis of PIDs. IPOPI maintains a network of experts, produces educational materials such as leaflets, and is involved in policy and research initiatives. The organization is based in Belgium, with a focus on global impact, and has partnerships with corporate sponsors. It provides resources for patients and healthcare professionals, and actively participates in policy and clinical development activities.
Melanoma Focus
Melanoma Focus is an expert organization dedicated to providing information, guidance, and support for patients, carers, and healthcare professionals affected by melanoma. They aim to stop melanoma and the suffering it causes through education, research, and advocacy. They offer specialist resources on melanoma stages and treatment, a confidential helpline staffed by expert skin cancer nurses, and organize multidisciplinary meetings and conferences for both patients and professionals. The charity also engages in fundraising activities and promotes sun safety awareness. Melanoma Focus is a patient advocacy organization dedicated to providing information, guidance, and support for patients, carers, and healthcare professionals affected by melanoma. They offer educational resources, support services, and promote melanoma research and awareness. The organization maintains a helpline, trial finder, and produces patient guides, guidelines, and educational videos. They are involved in melanoma staging, treatment, and clinical trials, and support the LGBTIQ+ community. Their activities include advocacy, education, research collaboration, and patient support programs. They also engage in policy and regulatory discussions and have a regional melanoma database project. The organization is committed to inclusivity and provides resources for rare melanoma types and bereavement support.
Champ 1 Foundation
Our mission is to improve the lives of those affected by CHAMP1 through clinical research, effective treatments, public awareness, early detection, family support and patient advocacy.
Tuberous Sclerosis Association
The Tuberous Sclerosis Association (TSA) was launched in 1977 with a membership of 50 families and funds of just £25. We have grown from a round robin support letter to a professional organisation providing support to families affected by Tuberous Sclerosis Complex (TSC) across the UK. For our five year strategy of 2019-2023, our aim is to ‘REACH more people and drive more REseArCH.’ The TSA is a registered charity with three charitable objectives: To support individuals affected by TSC, together with their families or carers To encourage and support research into the causes and management of TSC To provide education and information We look to our past to retain our community spirit, but drive forward by pushing the boundaries of what a small and dedicated team is capable of achieving.