AGALEMO – Costa Rica Asociacion Amalia y Glenn Dewey para Pacientes con Leucemia y Mieloma (Costa Rica)

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Scope of organisation

BLOOD CANCER support organisation (non-CLL-specific)

Description

AGALEMO (Amalia & Glenn Dewey Association for Leukemia and Myeloma Patients) was founded in 1998 and became a legal organization in 2004. We had legal struggles in order to have access to the treatments for CML and Myeloma which – up to now – are our focus. We have been in close contact with more than 20 leukemia organizations and more than 80 non-leukemia organizations in the LATAM region for over 15 years. Most LATAM region countries are in the low and middle-income segment of countries and healthcare are almost always well behind the standards.

IN 2018 we started a humble project in order to learn about CLL and invited physicians to talk about CLL in our usual CML/Myeloma conferences. Two different physicians in two different conferences undoubtedly pointed out that CLL is the worst treated leukemia in Costa Rica. AGALEMO has a seat at the steering committee of a federation of more than 40 health-related patient support organizations in Costa Rica. Being the only hematological cancer organization, we feel obliged to also effectively support CLL patients and other relegated diseases.

AGALEMO currently represents 10 members or patients with CLL per year (information as of October 2020).

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