Uncategorized-EN
Tools Anyone Can Use: Become a Social Media Superhero
Creating impactful social media content is essential for patient advocacy groups, but it can often feel like a time-consuming challenge. SPAGN, in collaboration with New Horizons GIST, is hosting a special webinar to empower advocates with tools that simplify and enhance the content creation process. đź“… When: December 6th, 2024 đź•• Time: 6 PM CET…
Read More“SPAGN Advocacy in Action Award 2025” & “Paola Gonzato Memory Award”
Call for Nominations SPAGN is thrilled to announce the opening of nominations for the prestigious Advocacy in Action Award 2025 and the newly introduced Paola Gonzato Memory Award for impactful projects in sarcoma patient advocacy. Advocacy in Action Award 2025 Since its inception in 2017, the Advocacy in Action Award has highlighted exceptional initiatives…
Read MoreUK: 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:Â
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 BenkĹ‘ (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.
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