Advocacy

AAMAC has a long history of patient and caregiver advocacy. When it was founded 20 years ago, volunteers advocated for a national unrelated bone marrow registry.

Recently, AAMAC successfully advocated for government funding of the MDS medication Revlimid in Ontario. We continue to advocate for similar funding in provinces where it is not yet provided.

We are also advocating for funding of an oral chelator, Exjade, and for a PNH medication called Solaris.

Advocates are people just like you who work in their communities to make a difference in the lives of those affected by aplastic anemia, myelodysplastic syndrome and PNH. Together with AAMAC, the contributions made by individuals across the country are raising awareness and making significant changes for those affected by aplastic anemia and myelodysplasia.

Writing a letter, making a telephone call, meeting with your local government representative, conducting an interview with a journalist or giving a presentation in your community are all steps towards advocating for change. Each new person you educate on the issues around aplastic anemia, MDS and PNH can lead to powerful ripple effects that reach across the country.

Advocates play an essential role in the efforts of AAMAC in making a difference for all those affected by aplastic anemia, MDS and PNH. Are you or someone you know interested in joining our advocacy efforts? You can click on one of the links below to access information and tools that will help you in your advocacy efforts or learn more about what advocates can do.

For more information on how to become an advocate, click on one of the links below:

• Government 101
• Working With the Government
• How To Contact Your Representative
• Government Letter Template
• Organizing a Letter-Writing Campaign
• Effective Messaging in Presentations
• Tips for Effective Public Speaking

For more information or to join our email list for updates, email info@aamac.ca.