The International Coalition for Cutaneous Lymphoma (ICCL) is an alliance of patient advocacy organizations seeking to improve access to care and treatment globally for people with cutaneous lymphoma. The founding member organizations understood that no single organization could meet all the needs of the people living with cutaneous lymphoma worldwide - but by working together to raise awareness, by sharing knowledge and resources, and promoting research, much could be accomplished.
The goals of the organization include:
- developing a sense of community amongst themselves, sharing their resources and knowledge in order to put the needs of the people living with cutaneous lymphoma
- identifying, mapping, and comparing the known expert centers across the globe so it becomes clear where care currently exists and where it is lacking
- tracking what treatments are available where to help identify areas of need
- raising the awareness of the disease in the medical community, both in dermatology and hematology
- raising awareness of ongoing cutaneous lymphoma research and clinical trials, and establishing a cutaneous lymphoma Community Advisory Board (CAB) to ensure a strong patient voice in research
Overtime the Cutaneous Lymphoma Foundation has had conversations with other organizations about how the global cutaneous lymphoma community could be best served. In October 2022, the Foundation invited representatives from patient organizations across multiple countries with an interest in cutaneous lymphoma to meet.
Eleven participants attended representing organizations from Austria, Finland, Germany, Italy, the Netherlands, Portugal, Spain, Switzerland, the United Kingdom, and the United States. They gathered to learn from each other’s experience in supporting and advocating for people affected by cutaneous lymphoma and explore the value of international collaboration between patient organizations. From this initial meeting, the ICCL was formed.
The Cutaneous Lymphoma Foundation currently serves as the ICCL's secretariat to oversee any administrative duties.
The following are ICCL member organizations and the country in which they are located:
Association of Cancer Patients in Finland (Finland)
Blood Cancer Association (Sweden)
Ensemble Leucemie Lymphomes Espoir (ELLyE) (France)
Irish Skin Foundation (Ireland)
Italian Association Against Leukemia, Lymphomas and Myeloma (Italy)
LyLe - Patient Organisation For Lymphoma, Leukemia And Mds (Denmark)
Lymphoma Action (United Kingdom)
Lymphoma Australia (Australia)
Lymphoma Canada (Canada)
Lymphoma Coalition (Canada)
lymphome.ch Patient Network Switzerland (Switzerland)
Portuguese Association Against Leukemia (Portugal)
Skin Lymphoma Foundation (The Netherlands)
Spanish Association of Patients with Cutaneous Lymphoma (AELIC) (Spain)