LyLe – Patient organisation for Lymphoma, Leukemia and MDS (Denmark)
Email
WebsiteScope of organisation
BLOOD CANCER support organisation (non-CLL-specific)
Description
LyLe is a patient association for people affected by hematologic cancers – directly as patients or indirectly as relatives. The association’s history is short. Lyle started at an information meeting in April 2007 and its work is based on dialogue at the meeting. Overall Lyle work form 3 areas: dialogue with others, information and impact on systems.
Our goal is always to obtain and deliver updated information for patients, their relatives and for people interested in haematological diseases we are working with. Networking with patients and relatives.
Support services offered and available resources
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