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LEAD Grants

Local Empowerment for Advocacy Development

No one knows their condition and the barriers they face better than our patients, and we believe in enabling them to be their own best advocates for better care. We offer a unique advocacy program, called LEAD Grants, that help at the patient organization level.

CSL Behring Local Empowerment for Advocacy Development (LEAD) Grants are community-based grants of approximately $10,000 (in the United States) / €10,000 (in the European Union). These grants are intended to help local patient organizations achieve their advocacy objectives. CSL Behring will award LEAD Grants to organizations that submit proposals demonstrating that financial assistance would help them address important local and state advocacy issues and initiatives.

Local patient organizations have already demonstrated significant leadership in tackling complex legislative and regulatory public policy issues. Advocacy can, however, be costly. CSL Behring LEAD Grants will help defray these costs. Moreover, CSL Behring will work with the grant recipients to advance their objectives in order to obtain success.

Choose Your Region

United States
Qualifying Criteria           

In order to qualify, a local organization must be:

  • a recognized patient advocacy organization representing individuals who use plasma/recombinant therapies to treat bleeding disorders, immune disorders, Alpha-1 deficiency, hereditary angioedema, CIDP or other conditions
  • a nonprofit organization with 501(c)(3) tax status
  • an organization currently addressing a specific advocacy issue or intending to address such an issue 
Examples           

Examples of advocacy issues for a LEAD Grant:

  • Creative advocacy endeavors designed to address a local public policy issue or to positively impact users of plasma-derived and recombinant therapies
  • The pursuit of standard-of-care or quality-of-care legislation or regulations for plasma-derived therapies and their recombinant alternatives
  • Efforts to defeat or overturn restrictive formulary proposals by a state Medicaid or an insurer
  • The pursuit of legislation or regulations that will increase access for individuals to obtain their plasma-derived or recombinant therapy
  • The creation of a grassroots program/database to lobby the state legislature
  • Creative advocacy endeavors designed to address a local public policy issue or to positively impact users of plasma-derived and recombinant therapies 
Application and Deadlines           

Complete and submit the grant application request form. Applications will be judged on the merits of the proposal and the advocacy issue being addressed.The U.S. window for submitting LEAD Grant proposals is open from October 1 to October 31 of each year, with recipients being announced in December.

 

If you would like to learn more, please contact advocacy@cslbehring.com.

 

LEAD Grant Application Form - U.S.

Latest Winners           
  • Colorado Chapter of the National Hemophilia Foundation
  • Danny's Dose Alliance
  • US Hereditary Angioedema Association (HAEA)
  • Hemophilia Association of Minnesota/Dakotas
  • New England Bleeding Disorders Advocacy Coalition
  • Ohio Bleeding Disorders Council
European Union
Qualifying Criteria           

In order to qualify, a local organisation must be:

  • a recognised patient advocacy organisation representing individuals who use plasma/recombinant therapies to treat bleeding disorders, immune disorders, Alpha-1 deficiency or other conditions
  • a nonprofit organisation
  • an organisation currently addressing a specific advocacy issue or intending to address such an issue 
Examples           

Examples of advocacy issues for a LEAD Grant:

  • Creative advocacy endeavors designed to address a local public policy issue or to positively impact users of plasma-derived and recombinant therapies
  • The pursuit of standard-of-care or quality-of-care legislation or regulations for plasma-derived therapies and their recombinant alternatives
  • The pursuit of legislation or regulations that will increase early diagnosis and access for patients to obtain their plasma-derived or recombinant therapy
  • The creation of a grassroots program to influence local legislation          
Application and Deadlines           

Complete and submit the grant application request form. Applications will be judged on the merits of the proposal and the advocacy issue being addressed. The European window for submitting LEAD Grant proposals is open from 1 October to 25 November 2020, with recipients being announced in January.

 

If you would like to learn more, please contact EUadvocacy@cslbehring.com.

 

LEAD Grant Application Form - EU

Inaugural Winners           
  • Imunodeficit.sk (Slovakia): for its proposal to address the ongoing lack of awareness in Slovakia relating to the importance of plasma donation and public understanding about the condition.
  • Alfa-1 Sverige (Sweden): for its proposal to grow the visibility of the organisation and increase support to its members, with a view to ensuring a more effective dissemination of information about Alpha 1 Antitrypsin Deficiency (AATD).
  • Alfa-1 de España (Spain): for its proposal to collaborate more closely with its Community Pharmacy, in order to better disseminate of information about Alpha 1 Antitrypsin Deficiency (AATD), with a view to promoting diagnosis, the adoption of early lifestyle changes and access to treatment.
  • AFNP (CIDP) (France): for its proposal to improve the access of patients with Chronic inflammatory demyelinating polyneuropathy (CIDP) to plasma protein therapies (PPTs).
  • AAEE (HAE) (Italy): for its proposals to demonstrate effectively to legislators the importance of Hereditary Angioedema (HAE) treatment.

 

CSL Behring's Lutz Bonacker, senior vice president and general manager Europe, explains the EU LEAD Grant Programme.