Bone Sarcoma Alliance
The SPAGN - Bone Sarcoma Alliance is an informal partnership initiative composed of
- patient groups/organizations
- patient/parent advocates
- patient networks
The Bone Sarcoma Alliance operates under the motto 'working together, making a difference' as part of the SPAGN umbrella to:
The Steering Committee
Pan Pantziarka
George Pantziarka TP53 Trust, UK
Ornela Gonzatto
Fondazione Paola Gonzato Rete Sarcoma / SPAGN, Italy
Zoe Davison
BCRT, UK
Our Goal is:
- To amplify the voice of ALL bone sarcoma patients beyond the specific type of bone sarcoma as well as to implement collaborations among them
- Bring together the patients and advocates from the different bone sarcoma communities while continuing to work in each patient community for those areas which are disease-specific
- Share experiences and learn from each other
- Build “evidence” in order to accelerate advances in patient treatments and lives
- Collaborate more effectively
- To better engage with professionals on issues that are common to all bone sarcomas
Member Groups
- AGITO (Associazione Genitori Insieme Tumori Ossei)
- BCRT
- Chondrosarcoma Foundation
- Chordoma Foundation
- Cum Cura VZW
- Érintettek Parents' Association for children with cancer or leukemia in Hungary
- EuroEwing Consortium
- Fondazione Paola Gonzato Rete Sarcoma / SPAGN
- George Pantziarka TP53 Trust
- German Sarcoma Foundation
- ICONIC
- Info Sarcomes
- MIB Agents
- Osteosarcoma Now
- Patientenplatform Sarcomen
- Sam Day Foundation
- Sarcoma Cancer Ireland
- Sarkomer
- Sock it to Sarcoma
- SPAGN
- Stow. Pomocy Chorym Na Miesaki "SARCOMA"
Different diseases, but common concerns:
- Problems with access to treatment
- Late diagnosis
- Quality of life
- Late effects from treatment
- Lack of research
- Lack of support