Italy: MC4 in corsa per la vita!
Italy: MC4 in corsa per la vita! Back to members Organisation Profile Our Mission: Base our direct experience, conventional medicine still cannot offer specific and effective treatments for rare cancer like EpS; once thesurgery, chemo and radio therapies have failed, there is not much left. There are compassionate treatments, experimental treatments which, however, if approved, are administered when it is too late. Our organization aims to change this paradigm, at least as regardsresearch on epithelioid sarcoma, the statutory pillars are based onthe deepening ofalternative studies to conventional methods and on the mutual enrichment ofinternational institutes and research centers interconnected through ourassociation. About us: In 2023 “MC4 in corsa per…
?????WECAN Academy 2023: Empowering Cancer Patient Advocates in Europe
WECAN – 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 umbrella cancer patient advocacy organizations active in Europe. One of WECAN’s aims is to provide education and resources for the cancer patient community. After almost three years of virtual training, the leading capacity-building event for cancer patient advocates – The WECAN Academy – returned to a face-to-face event in July 2023. The WECAN Academy was…
?????Understanding 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 with these rare oncological diseases. The survey data will help to amplify the research and advocacy of rare diseases. Therefore, your support is greatly appreciated and beneficial for you and fellow patients. You can participate, if: you are at least 18 years old you have sufficient English language skills you were diagnosed with any…
?????USA: 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
?????Join 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 sarcoma patients in the future. Taking part in a clinical trial can be a good choice. But it is often difficult to find a clinical trial that is right for you. We have invited two expert speakers to talk about and inform us about current, ongoing clinical trials in sarcomas ? ranging from soft tissue sarcomas…
?????How 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.
?????I 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.
?????Check It Out!
Sarcoma patient and patient advocate Roger Wilson shares his experience of finding a lump ? what happened and what he learned.
?????Patient Advocacy @CTOS 2023
It is our great pleasure to announce that patient advocacy will once again have a well-earned place at the Connective Tissue Oncology Society (CTOS) Annual Meeting. We will be hosting the Patient Advocacy Lounge at CTOS 2023 in Dublin: Patient Advocacy Lounge Liffey Hall 2, Convention Centre Dublin Open from Thursday, November 2 ? Saturday, November 4, 2023, from 8:30am to 5pm The lounge is a central place for patient representatives to meet with all participants of the conference. Be an active part! We would like to invite you — our dedicated and involved sarcoma patient advocacy groups — to be an active part of the Patient Advocacy Lounge.…
?????Quality of life in sarcomas?
Incorporating the patient voice in sarcoma research: How can we assess quality of life of sarcoma patients? Soft tissue and bone sarcoma patients form a diverse and rare patient group. Quality of life questionnaires used in research and clinical practice are not always complete and relevant for the unique experiences of this patient group. Take part in a quality of life study for sarcomas ? make your voice heard! Dr. Olga Husson and Prof. Dr. Winette van de Graaf at the Netherlands Cancer Institute in Amsterdam lead an international sarcoma survey study funded by the Quality of Life Group (QLG) of European Organization of Cancer and Treatment (EORTC) in collaboration…
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