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UK: Desmoid Fibromatosis UK Patients & Caregivers
UK: Desmoid Fibromatosis UK Patients & Caregivers Back to members Organisation Profile Desmoid Fibromatosis Patients & Carers U.K ( DFPCUK ) is here to empower, support and educate patients through and beyond their diagnosis of a desmoid tumour. We currently have our facebook page to share information and up to date news on what’s…
Read MoreUK: Sarcoma UK
UK: Sarcoma UK Back to members Organisation Profile Sarcoma UK is a national charity that funds vital research, offers support for anyone affected by sarcoma cancer and campaigns for better treatments. It is the only cancer charity in the UK focusing on all types of sarcoma. Our vision Where everyone affected by sarcoma cancer has…
Read MoreUK: GIST Cancer UK and PAWS GIST
UK: GIST Cancer and PAWS GIST Back to members Organisation Profile GIST Cancer UK are a network of patients and carers affected by GIST, sharing experience and offering mutual support. We raise awareness about GIST & represent patient interests at National and International meetings. Working to support an infrastructure that supports research and improves patient…
Read MoreUK: EHE Rare Cancer Charity
UK: EHE Rare Cancer Charity Back to members Organisation Epithelioid Haemangioendothelioma (EHE) is an indiscriminate and often destructive cancer occurring in men or woman at any age and which is often aggressive in children and young adults. We know little about this rare sarcoma which is why research is so critical. Yet because of its…
Read MoreUK: Bone Cancer Research Trust
UK: Bone Cancer Research Trust Back to members Organisation Profile Our Vision: A world where primary bone cancer is cured. Our Mission: To save lives and improve outcomes for people affected by primary bone cancer through Research, Awareness, Information and Support. How BCRT began: In 2004, a group of families who had lost children and…
Read MoreSwitzerland: Swiss GIST Group
Switzerland: Swiss GIST Group Back to members Organisation profile On January 14, 2010 the GIST-Group of Switzerland was founded in accordance with the provisions of the Swiss Civil Code. The aim of the association is to support GIST patients and their dependants and relatives. The group was actually founded 2003 by the late Dr.…
Read MoreSweden: GIST Sverige
Sweden: GIST Sverige Back to members Contact Information GIST Sverige 📧Email: gistcancer@telia.com Key Contacts General Information Year of establishment: SPAGN member since: No. of members:
Read MoreKids with cancer encourage each other
Having gone through herself a terribly difficult childhood – being diagnosed with Ewing sarcoma at the age of 3 ½ years – Marcsi Benkő (14) wanted to help other children fighting cancer in coping with the challenges they face during treatment. She remembered how the other kids in the hospital ward had helped her by explaining things that she could not understand, and she was deeply scared of. The idea of producing short video messages narrated by peer children in their own words emerged. Read here Marcsi’s touching story about her journey from a child with Ewing sarcoma to a teenage patient advocate.
Read MoreSPAGN Annual Conference 2025
We are thrilled to announce that the SPAGN Annual Conference 2025 will be held in Washington D.C., USA, from April 11-13, 2025. This will be our first conference in the United States, marking a significant milestone for our global community. This highly anticipated event will bring together patient advocates from around the world to discuss…
Read MoreNot just any cancer information day…. from the diary of a patient advocate
More than five years after therapy, our Editor-in-Chief Gabi Ott went back to the hospital where she was treated. But this time, it was not as a patient but as a patient advocate. Together with her colleagues, she attended to people looking for information on sarcoma. Being in the building also brought back memories of her darkest days – and the many people who helped her during this journey. A tribute to the nurses and doctors, and a patient organization.
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