Myeloma Patients Europe (MPE) has launched a Central and Eastern Europe (CEE) Workgroup on Access during our recent Annual General Meeting (AGM) in Munich, Germany.
The Workgroup is chaired by MPE board members, Kristina Modic, also CEO of our Slovenian member Slovensko Združenje Bolnikov Z Limfomom In Levkemijo L&L, and Biba Dodeva, President of our Macedonian member BORKA. It was launched in response to an identified need for coordinated action at a European level on region-specific access issues. If you are interested in joining the group, please complete the form at the end of this article.
“Across the Balkans and other Central and Eastern European countries, there are common and complex challenges for patient advocates to address. In countries such as Macedonia patients continue to struggle to access medicines which are routinely available in most parts of Europe and in many CEE countries there is limited access to clinical trials. MPE is well placed to coordinate collaboration and action on these issues, which is why we have launched this important Workgroup.”
During the AGM presentation, the workgroup Chairs outlined that the core purpose of establishing the group is to:
- Identify key challenges affecting access to high standards of diagnosis, treatment and care in CEE countries
- Information sharing between CEE organisations and MPE
- Problem-solving on national and European access challenges
- Ensuring MPE is aware of regional challenges faced by members and the patients/carers they represent
- Two-way communication between CEE members and MPE
- Identifying and addressing knowledge gaps in CEE advocacy
- Publishing reports on key issues identified
- Ensuring MPE can advocate effectively with industry and other stakeholders on issues affecting CEE countries
The CEE Workgroup forms part of the Myeloma Access Atlas, the MPE programme designed to assist members in identifying and developing strategies to overcome the national barriers to accessing high standards of diagnosis, treatment and care. The Workgroup will be steered by MPE, but the agenda will be driven by members in CEE countries who wish to participate.
In the coming weeks, MPE will be emailing all members in the CEE region to invite them to a “virtual” meeting which will be used to discuss the Workgroup and to identify the core challenges to be addressed. It is anticipated that this meeting will take place at the beginning of June.
If you are a patient or patient advocate in the CEE region and interested in participating in the work of the group, please enter your contact details here/in the form below.
Alternatively, you can email Kate Morgan directly at firstname.lastname@example.org