Leukämie- und Lymphom-Selbsthilfe Berlin e.V. (Germany)

Scope of organisation

BLOOD CANCER support organisation (non-CLL-specific)

Description

The first self-help group for leukemia patients in Berlin was initiated by Lothar Krohn in May 2000. There are now two groups in which patients with leukemia, lymphoma and other rare diseases of the hematopoietic system and their relatives meet.

Our association Leukemia and Lymphoma Self-Help Berlin eV is non-profit and entered in the register of associations. We are volunteers, independent and neutral.

What do we offer?

  • Up-to-date layman-understandable information
  • Exchange of experiences in group meetings
  • Mutual support
  • Individual, non-medical advice: in person, by telephone, by e-mail
  • Reports from congresses and events
  • Lectures by experts on current topics
  • Newsletter with dates and information

Our disease spectrum
More than 1,000 adults in Berlin contract leukemia, lymphoma or another disorder of the blood-forming system every year.

Blood and lymphatic system disorders include:

  • leukemias
  • lymphomas
  • Myelodysplastic Syndromes
  • Myeloproliferative neoplasms
  • anemias
  • other rare forms

Support services offered and available resources

 

Information on COVID-19

  • COVID-19 information hub

Services for HCP

  • Healthcare professional education

Patient support services

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