

Scope of organisation
Description
The beginnings of the Association of Patients with Blood Diseases of Slovenia date back to 1993, when, on the initiative of Jožef Pretnar, MD, and Erika Pertinač, MD, the first talks on the establishment of an Association of Patients with Blood Diseases began. After thorough preparation of the documentation, on 13 December 1995, patients after bone marrow transplantation, relatives of patients, doctors and nurses from the Clinical Department of Haematology of the University Clinical Centre in Ljubljana, and representatives of the Ministry of Health of the Republic of Slovenia gathered at the University Clinical Centre in Ljubljana and drafted the framework guidelines for the work and establishment of the Society. Thus, on 13 December 1995, the Association of Patients with Blood Diseases was founded and registered with a notary. Darja Jakelj was elected as the first President of the Society.
Support services offered and available resources
Information on COVID-19
- COVID-19 information hub
Services for HCP
- Healthcare professional education
Patient support services
- Buddy schemes (1:1 support)
- Directory of local / national support groups
- Local support groups
- Online group / chat or forum
- Patient meetings
- Telephone support / support helpline
- Welfare / financial support
Education services / Capacity building
- Conferences
- Educational events
- Publications and presentations at relevant blood cancer meetings
- Webinars
Digital Tools & Resources
- Apps
- Newsletter
- Podcasts
- Videos
- Website pages
CLL Information
- Clinical Trials directory
- CLL news and conference coverage
- Online leaflets & booklets
- Printed leaflets & booklets
Campaigning and Advocacy
- Advisory statements and position papers
- Awareness campaigns
- Health Technology Appraisals (HTA)
- Input in writing and/or in person to government and regulatory organizations
- Fundraising resources
- Personal Advocacy
- Petitions
- Surveys of the community served