Hematoonkologiczni (Poland)

Scope of organisation

BLOOD CANCER support organisation (non-CLL-specific)

Description

This association of patients and their relatives was established for people suffering from hematological cancers and their families.

The organization we created was established in March 2019, but in fact we have been operating since October 2015 as a support group for patients with myelofibrosis under the patronage of the Polish Coalition of Oncological Patients.

Throughout all these years, we took an active part in various types of training, meetings in the Seym and Senate, in the office of the ministers. We are a conversation partner, thanks to our efforts our patients have access to modern treatment. We are a co-organizer of meetings with patients with blood cancer all over Poland.

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