CLL Advocates Network (Worldwide)


Scope of organisation
CLL-specific support group/organisation
Description
As a global network, the CLL Advocates Network´s (CLLAN) mission is to improve Chronic Lymphocytic Leukaemia (CLL) patient outcomes. The following principles guide our work:
- Act as an international collective representative of CLL patient advocates
- Develop tools to empower advocates to support their local CLL communities
- Share best practices
- Advocate for better care and access
- Aid in the development of CLL specific support in all countries
Individual support to patients and their loved ones remains in the scope of the national or regional advocacy associations and advocates.
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: digital workshops and capacity building
- 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 World CLL Day
- Awareness campaigns International COVID-19 Blood Cancer Coalition (ICBCC)
- 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