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ADVOCACY

Alexion shares key goals with patient organizations worldwide, including increasing the understanding of rare diseases, improving patient care, and enhancing patient access to innovative therapies.

OUR ADVOCACY PARTNERS

Global

  • aHUS Alliance
    Nature of support: Grants supporting initiatives of select member organizations as shown in the geographic breakdown below.
  • International PNH Interest Group (IPIG)
    Nature of support: Grant supporting initiatives of the organization
  • Global Genes
    Nature of support: Grants supporting regional educational meetings for aHUS patients, 2014 Gala to Champions of Hope, and Corporate Alliance Membership

North America

  • aHUS Canada
    Nature of support: Grant supporting initiatives of the organization
  • Aplastic Anemia Myelodysplasia Association of Canada
    Nature of support: Sponsorship of the Spring meeting
  • Aplastic Anemia & MDS International Foundation (AA-MDSIF)
    Nature of support: Grants supporting Foundation’s annual patient and family conference and other educational initiatives for people affected by PNH
  • Canadian Association of PNH Patients
    Nature of support: Grant supporting initiatives of the organization
  • Canadian Organization for Rare Disorders (CORD)
    Nature of support: Grants supporting various initiatives including Fall 2014 Conference, CORD Consultation on Canadian Framework for Access to Rare Disease Therapies, forums for patients and the rare disease community to raise awareness of their capabilities
  • The Atypical HUS Foundation
    Nature of support: Unrestricted grant supporting the Foundation’s educational outreach, events to raise disease awareness and strengthen the organization’s core capacity
  • Guthy-Jackson Charitable Foundation
    Nature of support: Sponsorship of Industry Council
  • Kidney Foundation of Canada
    Nature of support: Grant for regional event to support Kidney Foundation of Canada, grant to support Hope Affair Gala
  • The Magic Foundation
    Nature of support: Grant support for National Patient Conference
  • Myasthenia Gravis Foundation of America
    Nature of support: Grant for patient meeting
  • National Kidney Foundation
    Nature of support: Grant for NKF’s Patient Help Line and the NKF Cares web page on kidney.org
  • National Organization for Rare Disorders (NORD)
    Nature of support: Grants supporting regional educational meetings for PNH and aHUS patients and their families
  • The Network of Rare Blood Disorder Organizations – Alberta Chapter
    Nature of support: Grant supporting 2013 patient education day
  • PNH Foundation
    Nature of support: Grant supporting Foundation’s annual PNH Walk, which promotes disease awareness and raises funds to support PNH research
  • Rare Disease Legislative Advocates
    Nature of support: Grant support for RDLA’s 2014-2015 legislative briefings, legislative conferences and gala event
  • Soft Bones and Soft Bones Canada
    Nature of support: Grant to support patient meetings, HPP Awareness Day Activities, and educational materials
  • Wilson Disease Association
    Nature of support: Grant to support Wilson Disease community awareness and education

South America

  • Colombian Federation for Complement Diseases (FECOER)
    Nature of support: Grant supporting initiatives of the organization
  • Patient Association for Complement Disorders (APEC Colombia)
    Nature of support: Grant supporting initiatives of the organization

Australasia

  • aHUS Patient Support Group Australia
    Nature of support: Grant supporting meeting on November 16, 2013
  • Korean Association Blood Cancer support group (KABC)
    Nature of support: Provide financial support that can help patients struggling against PNH to disburden their financial liabilities and allow them to concentrate on the treatment only
  • PNH Support Association of Australia Inc.
    Nature of support: Grant supporting initiatives of the organization
  • PNH Support Association of NZ (PNHSANZ)
    Nature of support: Grant supporting initiatives of the organization
  • Rare Voices Australia
    Nature of support: Grant supporting initiatives of the organization

Europe

  • EURORDIS – European Organization for Rare Diseases
    Nature of support: Grant supporting patient meetings and 2013 Membership Dues
  • Hypophosphatasie Europe
    Nature of support: Grant supporting initiatives of the organization
  • Orphanet
    Nature of support: Annual grant supporting various Orphanet yearly projects and support of Emergency Guidelines program



 
 

View the list of Patient Advocacy Organizations (PAOs) that received financial support from Alexion.
2015 Financial Support to PAOs

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