Find Your Patient Support Community

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

It's in the Bag Cancer Support

It's in the Bag is a charity dedicated to supporting men diagnosed with testicular cancer through awareness, support services, fundraising, and survivor programs. They organize events like Test Fest and The Testicular Ball to raise funds and awareness. The organization provides educational resources, support lines, survivor toolkit afternoons, and collaborates with NHS hospitals and other charities. They focus on early detection, survival, and empowering survivors. Their activities include campaigning for regular self-checks, providing information packs, and running awareness campaigns such as 'Don't Bottle It' and 'Match Fit'. They have a strong social media presence and partnerships with Bristol-based companies and national sponsors. The charity is registered with the Charity Commission, operates mainly in the UK, and has a dedicated team of staff and volunteers. Their mission is to save lives through early detection and to improve the quality of life for those affected by testicular cancer.

World Pancreatic Cancer Coalition

Asociacionalma

Asociación ALMA is a patient organization formed by patients and family members of patients with leukemia and other blood disorders. It aims to provide emotional and practical support to patients with leukemia and other blood pathologies not supported by other organizations. The organization offers various programs including patient education, emotional containment, legal advice, and emotional support. It seeks to empower patients through educational webinars, patient meetings, and support groups. The organization also advocates for patient rights, collaborates with sponsors and members, and maintains a focus on leukemia and related hematological conditions. It is based in Argentina and operates nationally, with a mission to support and empower blood disorder patients.

Cancer Support France

Cancer Support France is a patient advocacy organization dedicated to providing support, information, and advocacy for individuals affected by cancer in France. They offer a helpline, support groups, educational resources, and community activities to improve the quality of life for cancer patients and their families. The organization collaborates with healthcare providers, researchers, and other charities to promote cancer awareness, support research, and influence health policies. They operate nationwide across France, engaging in advocacy campaigns, patient education initiatives, and volunteer programs. Their services include emotional support, practical assistance, and information dissemination to empower patients and caregivers. Cancer Support France is a national organization dedicated to providing support, information, and advocacy for cancer patients and their families in France. It offers a range of support services, including support groups, educational resources, and community activities. The organization collaborates with international cancer organizations and participates in policy advocacy to improve cancer care and patient quality of life. It maintains a network of local associations across France, facilitating access to support and information at the regional level. The organization also engages in public awareness campaigns and provides resources for cancer prevention, early detection, and survivorship. Cancer Support France is committed to fostering a supportive community for those affected by cancer and promoting research and policy initiatives to advance cancer care.

Myotubular Trust

Myotubular Trust, research and funding for centronuclear myopathy as well as supporting families experiencing this life threatening disability