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WECAN Academy 2023: Empowering Cancer Patient Advocates in Europe
WECAN –Â The Workgroup of European Cancer Patient Advocacy Networks was established in 2015 when 15 umbrella cancer patient advocacy organizations came together to initiate the informal network. WECAN was born out of the true need for the cancer patient community to share experiences and work together. SPAGN is one of the current over 20…
Read MoreUnderstanding Mental Health in Rare Soft-Tissue Tumor Patients: Take the Survey and Share Your Insights
Mental health in patients with rare soft-tissue tumors What is this online survey about? The purpose of this survey is to learn about the experiences and challenges of individuals with soft-tissue tumors. In doing so, we focus on a variety of mental health-related aspects which will help to gain a better understanding of patients…
Read MoreItaly: MC4 in corsa per la vita!
Contact Information Email: info@mc4incorsaperlavita.org Web: https://www.mc4incorsaperlavita.org/ Facebook: https://www.facebook.com/mc4incorsaperlavita/ Contact Person Mariagrazia Vescia (President) Email: mariagrazia.vescia@mc4incorsaperlavita.org Giovanni Vescia (Vice President) Email: giovanni.vescia@mc4incorsaperlavita.org Organisation Profile The association no profit “MC4 in corsa per la vita! ETS” (MC4 Running for life! ETS) was born in 2022, from the strong wiil of the family and mother Mariagrazia,…
Read MoreUSA: Sarcoma Strong
USA: Sarcoma Strong Back to members Organisation Profile OUR WHY or Vision: To see less human suffering from sarcoma. Â OUR HOW or Mission: To inspire Orthopaedic Oncology leaders around the US and globally to lead the way To lead efforts of continuous knowledge improvement of this rare disease Connect the global sarcoma community…
Read MoreJapan: GISTERS
Japan: GISTERS Back to members Organisation Profile GISTERS… The name sounds like the name of a baseball team, but it was originally conceived by everyone to participate in the first “Relay for Life Japan in Tsukuba” held in Japan in 2006, in other words, it was a “team” name. We want to make…
Read MoreUSA: Sarcoma Strong
Contact Information Sarcoma Strong1367 Washington Ave, Suite 209Albany NY 12206USAPhone: 5183786499Telefax: 5187012912Email: sarcomastrong@gmail.comWeb: https://sarcomastrong.com Contact Person Dr. Matthew R. DiCaprioFounder of Sarcoma Strong / Orthopedic OncologistPhone: 5183786499E-Mail: sarcomastrong@gmail.com Mrs. Blair DiCaprioDirector of public Relations and Marketing Organisation Profile
Read MoreJoin our next Knowledge Spot Webinar – November 21st, 2023
Open clinical studies in soft tissue sarcomas, GIST and bone sarcomas Speakers: Nathalie Gaspar, France & Robin Jones, UK For rare cancers as sarcomas, clinical trials are an important part of the treatment concept, as standard therapies are often limited. They might be able provide an improved care for current patients, but they will certainly help…
Read MoreHow to Successfully Engage Policymakers for Sarcoma Patients
In this post, we focus on one specific aspect where Sarcoma UK has really set a standard: How to advocate for changes at the policy level. Richard Davidson, Chief Executive of Sarcoma UK, shares his insights into policy and public affairs work in a talk with SPAGN Volunteer Gabi Ott. What started off as a patient-led information hub for sarcoma patients, is today an influential charity. On 25 September 2023, the Cancer Research Day, Sarcoma UK hosted a reception in Downing Street alongside Chancellor of the Exchequer Rt Hon Jeremy Hunt MP. Other special guests included celebrity ambassadors like ambassadors TommyInnit and DJ Graeme Park.
Read MoreI Lost My Son and Found My Purpose
We spoke with the founder of the first sarcoma organization in Bulgaria, Lidiya Vitanova, who lost her young son, Niki, to sarcoma. Lidiya talked to us about the sarcoma situation in her country as well as her motivation and goals for improving the outcomes of people diagnosed with sarcoma and other rare diseases.
Read MoreYour poster @CTOS 2023
Show Off Your Advocacy Work at CTOS 2023, to the broadest international community of sarcoma experts: Create and Submit a Poster! Sarcoma patient advocacy organizations are cordially invited to participate in SPAGN’s poster presentation session that will be held at this year’s CTOS conference. This session is an opportunity for you to showcase your organization…
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