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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
