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
- 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