Posts Tagged ‘patient advocacy’
Submissions open for 2023/24 Advocacy in Action Awards
Each year SPAGN awards special recognition to member groups advancing patient rights and improving patient support. The submissions are OPEN for 2023/2024 projects. Winners will be selected by a panel of judges and announced at the 2024 SPAGN Annual Conference in Rome.
Read MoreSarcoma Intelligent Specialist Network and How We Got Here
One of the first things a newly diagnosed sarcoma patient is told when they contact a patient support group is that they must be treated by expert doctors in a specialist centre. But no one knows how to judge whether there are experts in a centre or not. SPAGN therefore set out a year ago to work towards a universally acceptable definition of an expert centre. Such a definition would allow new patients to get a quick understanding, advocacy groups to gain deeper knowledge of their country’s resources, and doctors in centres that are developing their expertise to have a clear understanding of what we as patients expect.
Read MoreCTOS 2023 Highlights: Patient Advocacy Lounge Leaves a Lasting Impression
The Connective Tissue Oncology Society held its annual conference in Dublin, Ireland from November 1-4, 2023. The conference, an opportunity for the global sarcoma community to come together, has left a lasting impression: The role of patient advocates in this community is growing and SPAGN’s Patient Advocacy Lounge was a huge success.
Read MorePatient Advocates Meet the World’s Sarcoma Specialists in November
The oncology community is preparing to gather for the annual conference of the Connective Tissue Oncology Society (CTOS) in Dublin from November 1-4. This pivotal event brings together oncologists, researchers, and patient advocates dedicated to the common goal of advancing the understanding and treatment of these rare cancers. We take a closer look at the importance of the CTOS-SPAGN partnership and its global impact going forward.
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 MoreCheck It Out!
Sarcoma patient and patient advocate Roger Wilson shares his experience of finding a lump – what happened and what he learned.
Read MoreWhen the Patient Becomes the Researcher
Dr. Sydney Stern, biomedical scientist and patient advocate, describes her personal journey as a patient with a rare tumor disease and her quest for answers through science. She calls for patients to get involved in research and outlines options for doing so.
Read MoreFacilitating Collaboration in Sarcoma Care
In this interview, SPAGN Communications Director Cory Archibald speaks with Dr. Bernd Kasper, to learn about the role of patient advocacy groups like SPAGN in strengthening global cooperation to improve patient outcomes.
Read More5 Questions Every Patient Should Ask When Searching for Information about Sarcoma
Getting a sarcoma diagnosis is a life-altering event that brings a wave of emotions and questions. Once the initial shock subsides, many patients turn to the internet in search of information about their disease. Despite the common advice of “Whatever you do, don’t google it!”, seeking information about your disease and its treatment can be empowering. Instead of discouraging patients from seeking information, it’s important to guide them towards reliable sources of information and support them in becoming health literate.
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