Alexion Pharmaceuticals

• Overview
• Leadership
• Mission
• Ultra-Rare Diseases
• Public Policy
• Advocacy
• Partnering
• Global Capabilities
• Milestones
• Stories

Advocacy

Alexion shares many of the same goals as patient organizations worldwide, including increasing the understanding of rare and ultra-rare diseases, improving patient care, and enhancing patient access to innovative therapies.

With these goals in mind, we partner with patient advocacy organizations to address the diverse needs of patients with PNH around the world. We support the work of the following patient organizations:

• 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

• The COMPLEMENT Foundation

  Nature of support: This foundation, established by Alexion, provides financial assistance for patients who do not have insurance, access to insurance, or any other means for obtaining Soliris

• Eurordis – European Organization for Rare Diseases

  Nature of support: ERTC Emerald member and grant supporting annual membership meetings

• National Organization for Rare Disorders (NORD)

  Nature of support: grants supporting regional educational meetings for PNH patients and their families throughout the United States and activities of NORD’s Corporate Council, as well as grants to the PNH Fund to help cover treatment-related costs for underinsured patients with PNH

• Orphanet

  Nature of support: annual grant supporting various Orphanet yearly projects and support of Emergency Guidelines program

• PNH Foundation

  Nature of support: grant supporting Foundation’s annual PNH Walk, which promotes disease awareness and raises funds to support PNH research

Alexion also supports the work of the following patient organizations in specific countries:

• Denmark: Sjældne Diagnoser Danmark

  Nature of support: grant supporting the organization of the first European Rare Disease Day and of patient meeting

• France: Association HPN FRANCE - Aplasie Médullaire

  Nature of support: grant supporting funding for research, patient association awareness campaign and development of information leaflets

• Netherlands: Stichting Zeldzame Bloedziekten

  Nature of support: grant supporting organization of yearly patient meetings and supporting www.hematoslife.com European patient website project

• Slovenia: Slovenian lymphoma and leukemia patient association, L&L

  Nature of support: grant supporting the participation of association members to European patient meetings

• Spain: Feder Foundation: Spanish Foundation for Rare Diseases

  Nature of support: grant to help this foundation support small patient groups, including a PNH patient group

• Spain: Asociación Española de enfermos y familiares con la enfermedad de la HPN

  Nature of support: grant supporting patient meetings and development of information leaflets.

• Sweden: Sällsynta diagnoser

  Nature of the support: grant supporting the elaboration of a new website