Our work in osteosarcoma (OS) started in 2021, with many months dedicated to talking with experts, patients and other charities. These initial conversations helped us to identify how best we could support patients and their families. 2022 was the year we made these ideas into a reality.
Osteosarcoma Now Website
In March 2022 we launched Osteosarcoma Now, our patient focused website. Our aim is to empower patients by making information both available and accessible. Osteosarcoma Now includes a research blog, a worldwide map of charities, and information on OS. At the heart of the website is a clinical trials database designed for patients. Our first version of the database was launched in June. We asked for feedback and sent out a survey. Based on your feedback we started including information on who can and can’t take part in a clinical trial. We also streamlined the interface and gave the database a name. We are delighted to be launching the new improved clinical trial database next week.
We have also launched the Osteosarcoma Now Newsletter (ONN). ONN is published every 3 months and it aims to keep you informed about the latest OS news. Each issue will discuss the current research and signpost to events across the world. It will also showcase the work of sarcoma charities and the support they provide. Sign up now!
Research
We announced our two 2021 OS grant holders at the start of the year. Both projects focused on combining drugs to treat OS. We will soon be announcing our 2022 grant holders. Although smaller projects, they will lay the foundation for important future work. We will keep you up to date with their progress.
Our understanding of OS is constantly growing, and we will be continuing to fund new projects. However, this year we also want patients to be involved in our funding decisions. At the end of 2022, we welcomed three members to our new patient advisory board. Members of this board will have the chance to review research applications and take part in future projects. Their insight will ensure that the work we fund is both relevant and impactful. We are so thankful to them for taking the time to support our charity.
If you or a family member has been affected by OS and would like to get involved with the board please email us.
During sarcoma awareness month, three researchers at the start of their careers, took over our research blog. We are passionate about supporting early career researchers. We hope to inspire them and provide opportunities to grow. They are the next generation of researchers who will advance research into OS.
Conferences
Several conferences were held this in 2022 dedicated to sarcoma research. Topics included combination therapy, new drug development and genetics. Hearing about the latest research into sarcoma fills us with hope for the future. It’s also been fantastic to meet patients, clinicians, researchers and people from the charity sector at these events.
We also attended the first in-person FOSTER (Fighting Osteosarcoma Through European Research) meeting. FOSTER is the first dedicated OS consortium. Held over two days, clinicians, researchers and patient advocates discussed the next steps needed to advance research into OS. We are delighted to be part of FOSTER. Together we can make a better world. Read the meeting report.
Memberships
We are thrilled to have become a member of Sarcoma Patient Advocacy Global Network (SPAGN). SPAGN supports and unites sarcoma charities. Their ultimate goal is to drive research and ensure that all sarcoma patients are supported. We are proud to be part of this community.
We would like to say a huge heartfelt thanks to everyone who got involved with our work in 2022. We will continue to fund research into OS and support patients and their families.
See the image below for the Osteosarcoma Now 2022 highlights. It is also available in PDF format.
