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Discover support groups and communities where people share experiences, answer questions, and help each other navigate life with your condition.
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Featured Communities
Browse our curated list of patient advocacy groups and support networks making a difference today.
Dravet Syndrome UK
Dravet Syndrome UK is a patient support organization dedicated to providing information, emotional support, and resources for families affected by Dravet Syndrome. They offer practical and emotional support, mental health support, resources and advice, financial grants, and support for families overseas. The organization also engages in research, advocacy, and professional collaboration to improve care and awareness of Dravet Syndrome. They maintain a website with extensive resources, including guides, leaflets, and information for healthcare professionals and families. The charity is based in Chesterfield, UK, with a charity number 1128289, and has a presence on social media platforms such as Twitter, Facebook, Instagram, LinkedIn, and YouTube.
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
Digestive Cancers Europe
Digestive Cancers Europe is a patient advocacy organization dedicated to improving the lives of individuals affected by digestive cancers through advocacy, education, research, and support initiatives. They work to raise awareness, influence policy, and provide resources and support to patients and caregivers across Europe. The organization collaborates with healthcare professionals, researchers, and policymakers to advance understanding and treatment of digestive cancers, including colorectal, gastric, liver, pancreatic, and other rare cancers. They also focus on promoting early detection, personalized medicine, and access to innovative therapies. Their activities include publishing educational materials, organizing awareness campaigns, supporting research projects, and engaging in policy advocacy to improve patient outcomes and healthcare systems.
Children & Young People's Cancer Association (CCLG)
CCLG - The Children & Young People's Cancer Association is a charity dedicated to supporting children, young people, and their families affected by cancer. They focus on research, early diagnosis, advocacy, education, and support services. They operate a wide range of programs including public awareness campaigns like Child Cancer Smart, fundraising initiatives, and professional guidance to improve cancer diagnosis and treatment in children and young people. They also lead research projects, collaborate with healthcare professionals, and influence policy to improve outcomes for young cancer patients. CCLG - The Children & Young People's Cancer Association is a registered charity in England, Wales, and Scotland dedicated to supporting children, young people, and their families affected by cancer. The organization provides information resources, advocacy, research, and support services. It operates from Leicester, UK, and has a focus on childhood and young people's cancers, including types such as leukemia, brain tumors, and other pediatric cancers. CCLG collaborates with medical research charities, offers educational materials, and engages in policy and advocacy activities to improve cancer care and outcomes for young patients.
European Tuberous Sclerosis Complex Association
Established in 2012, ETSC is a federation of Tuberous Sclerosis Associations. ETSC believes in total “patient experience” and that interaction with all healthcare providers and relative agencies is paramount. Objectives • Increase knowledge and awareness on TSC • Promote implementation of European and International diagnostic criteria, surveillance and treatment guidelines • Stimulate research on TSC • Interest European and International organisations in the welfare of those with TSC and their families • Exchange information of mutual interest between associations. Aims • Total patient experience and interaction in each individual country with all healthcare providers and agencies • Uniting TSC Associations to ensure knowledge and surveillance on our rare disorder and orphan drugs are increased • Good working relationships with Pharma and the inclusion of representatives from National Organisations in information and education on Clinical trials and any new drugs being developed for use with our rare disease • Vigilance on protocols and new drugs
Fundación Colombiana de Leucemia y Linfoma
Fundación Colombiana de Leucemia y Linfoma - Funcolombiana De Leucemia Linfoma en Bogotá. Centro de referencia en Colombia sobre leucemia y linfoma. La mejor opción en orientación y soporte para...
The Power of Community
Navigating a health condition is easier when you have the right support. Here's what you can find.
Shared Experiences
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Practical Information
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Emotional Support
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Advocacy & Awareness
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