Leukämie-Online e.V. / LeukaNET (Germany)

Scope of organisation

Description

The internet platform www.leukaemie-online.de, operated by the non-profit, patient-led association LeukaNET e.V., is one of the most frequented internet platforms for leukemia patients and their relatives in Germany, Austria and German-speaking Switzerland. For many leukemia patients, our platform and the volunteer association behind it have served as a reliable knowledge platform and exchange opportunity for more than 20 years. Leukemia-Online is operated without commercial interest as an open and independent online community by patients for patients and relatives and without generous funding from cancer charities, the healthcare system or health insurance companies. With 3,400 registered participants, thousands of unregistered visitors and almost 40,400 contributions on around 4,700 topics, it has become an active information and communication hub for leukemia patients.

 

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

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