ARCrare – Asociația Română de Cancere Rare (Romanian Association of Rare Cancers) (Romania)
Email
WebsiteScope of organisation
RARE CANCER support organisation (non-CLL specific)
Description
The Romanian Association of Rare Cancers – ARCrare was founded in 2011. We started from the idea that patients affected by rare cancers face the same problems as patients affected by rare diseases, most of them feel marginalized by both rare diseases and common cancers organizations, and therefore we have set ourselves the goal through the Romanian Rare Cancers Association to improve this situation.
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