Association of citizens for rare diseases LIFE WITH CHALLENGES Bitola (Macedonia)


Scope of organisation
Other
Description
The association of citizens for rare disease “Life With Challenges” is founded by parents and patients who face life with rare diseases in the year 2009.
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