L&L – Slovenia Lymphoma & Leukemia Patient Association (Slovenia)

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Scope of organisation

BLOOD CANCER support organisation (non-CLL-specific)

Description

The Slovenian Association of Patients with Lymphoma and Leukemia, L & L, was founded on May 15, 2007.

OUR OBJECTIVES

  • Informing and raising public awareness of lymphomas, leukemia and other blood diseases,
  • The quest for the early detection of lymphomas, leukemia and other blood diseases, and the best diagnostic treatment and treatment of patients,
  • The pursuit of comprehensive care for patients during and after treatment,
  • Informing and assisting patients and their relatives during treatment,
  • Care for patients to understand the proposed methods of treatment and to participate in clinical trials at home and abroad,Raising awareness of their rights in the field of health and social care and education,
  • Advocating for a correct and human attitude towards the patient by all the participating institutions in the process of healing, rehabilitation and return to the working, social and educational environment,
  • Raising awareness of the importance of donation of blood-forming stem cells,
    Promoting the spread of the Slovenian register of blood donor stem cell donors,
  • Organization of professional lectures, conferences and congresses for patients and relatives in the field of health and a healthy lifestyle, organization of workshops, sports and cultural events, etc.,
  • Promoting a healthy lifestyle
  • Developing and organizing self-help and volunteering.

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