What are your priorities in bone sarcoma research?
Research Priorities in Bone Sarcomas
Bone sarcomas are a diverse and hard to treat group of rare cancers. People with bone sarcomas (or primary bone cancer) have high unmet medical needs, and face a range of challenges including delays to diagnosis, disparities in access to treatments and a relative lack of clinical trial and research opportunities.
First ever global survey on bone sarcomas
The patients and parents group in the FOSTER (Fight OSteosarcoma Through European Research) consortium untertook the first ever global survey for bone sarcoma patients. We wanted to know what your experiences have been and where your priorities lie in terms of the research agenda.
This survey was open to all bone sarcoma patients or survivors (regardless of type), to all carers of bone sarcoma patients and to patient representatives in the field of bone sarcomas. The survey was available in seven different languages.
The survey is closed and data are being analyzed.
What was the aim?
This survey helps us to identify where the disparities lie, shine a light on differences between bone sarcoma sub-types and variations across ages. We want to gauge the experiences of patients and parents and help direct attention to those research priorities.
| About FOSTER (Fight OSteosarcoma Through European Research)
This consortium aims at improving outcomes of patients with osteosarcoma. It brings together oncologists, researchers, radiologists, patients, parents and others to work together across 20 countries. Find out more here. |
Definitely not enough knowledge, expertise and access to trials outside the USA. I live in Australia, Brisbane. I have been dealing with chordoma for 7 years …
8 operations, 5 goes at radiation it started in L3L4 made its way up my spine up to c3. Most recently in my femour bones. I am now a paraplegic ..I can cope with thus just need the chordoma to stop growing! Please offer assistance to sufferers outside the USA. We matter too 💜
Dear Carmelina, please contact the Chordoma Foundation. We are an international organisation with contacts all over the world, not just the US. The patient navigators can be reached through andrea@chordomafoundation.org. Also, there is a patient group in Australia who you can contact through Facebook: OZ Chordoma Warriors.
As hospitals go, have you contacted https://www.sydneysarcomaunit.com.au/chordomas?
Chordoma is a very rare, very difficult to treat type of cancer and we are working towards better treatment options. Wishing you all the best, Caroline