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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.

United States

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 non-profit organization with a 501(c)(3) tax status
  • an organization currently addressing a specific advocacy issue or intending to address such an issue

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

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 - US

  • 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

CSL Behring's Senior Vice President & General Manager EU Global Commercial Operations Lutz Bonacker explains the program.

In order to qualify, a local organisation must be:

  • a recognised patient advocacy organisation representing individuals advocating for access to plasma/recombinant therapies and other innovative therapies to treat bleeding disorders, immune disorders, Alpha 1 deficiency, Hereditary Angioedema, or Sickle Cell disease
  • a non-profit organisation
  • an organisation currently addressing a specific advocacy issue or intending to address such an issue

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, recombinant or other innovative therapies
  • The pursuit of standard-of-care or quality-of-care legislation or regulations for plasma-derived therapies, their recombinant alternatives or other innovative therapies
  • The pursuit of legislation or regulations that will increase early diagnosis and access for patients to obtain their plasma-derived, recombinant or other innovative therapy
  • The creation of a grassroots program to influence local legislation

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 3 January to 13 February 2022, with recipients being announced in March.

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

LEAD Grant Application Form - Europe

LEAD EU Grant Winners 2021

Congratulations to the Winners of the CSL Behring Europe LEAD Grant Programme!

We would like to extend our warmest congratulations to the five winners of the second ever CSL Behring Europe LEAD Grant programme, which aims to help local patient organisations achieve their advocacy objectives.

The following patient advocacy organisations were selected across a variety of disease areas and geographies for their comprehensive and exciting plans, showing commitment and innovation:

  • IRIS/PID France: to fund their grassroots digital campaign on access to regular Ig in a patient centred approach
  • Haemophilia Poland: to fund their awareness and educational campaign on Von Willebrand disease
  • AEDAF/HAE Spain: to partly fund their campaign to improve equal access to healthcare, diagnosis and modern HAE treatments in Spain
  • HAE Bulgaria: to partly fund their advocacy activities to changes in the legislation ensuring the access of the patients with HAE to prophylaxis and support patient education of self-administration.
  • Uniamo/Rare Diseases Italy: to partly fund their activities to influence the approval of the new national plan for rare diseases and framework law on rare diseases, and approval of the list of new diseases for the new-born screening panel

We would also like to recognise the many other participants who submitted their applications to us, covering a wide range of issues, including: access to early diagnosis and novel treatments; local disease awareness; patient education, including self-administration; the need for plasma donations and the opening of collection centres; and influencing new rare disease plans.