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 Europe). 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

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 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

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

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 - US Or Download this PDF

Submit completed applications electronically by the deadline of October 31 to: advocacy@cslbehring.com

or mail

CSL Behring
Attn: LEAD Grant Committee
1020 First Avenue
King of Prussia, PA 19406
Phone: 610-878-4000

In order to be considered for a LEAD Grant award, your application must be received by the deadline noted above. Grant recipients will be announced in December

Please answer the following questions and provide as much detail as possible describing the opportunity for LEAD Grant funding. Please feel free to submit any supporting documentation that would be helpful to explain the proposal :

1. What advocacy issue would the LEAD Grant address?

2. What is the desired impact resulting from addressing this issue?

3. Please describe the time frame for implementing the project, including key milestones.

4. What is your overall projected budget for this advocacy initiative?

All grantees will be required to submit a progress report six months from receipt of funding on activities and achievements to-date.

Any additional relevant information or support material may be included with the application. If this application is being submitted on behalf of a coalition or council, please include letters of support from coalition or council members.

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

Europe

Qualifying Criteria

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

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

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 8 January to 18 February 2024, with recipients being announced in April.

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

LEAD Grant Application Online Form - Europe OR Download this PDF

Submit completed applications electronically by the deadline of 18 February 2024 to: EUadvocacy@cslbehring.com

In order to be considered for a European LEAD Grant award, your application must be received by the deadline noted above. Grant recipients will be announced in April 2024.

Please answer the following questions and provide as much detail as possible describing the opportunity for European LEAD Grant funding. Please feel free to submit any supporting documentation that would be helpful to explain the proposal:

1. What advocacy issue would the European LEAD Grant address?

2. What is the desired impact resulting from addressing this issue?

3. Please describe the time frame for implementing the project, including key milestones.

4. What is your overall projected budget for this advocacy initiative?

All grantees will be required to submit a progress report six months from receipt of funding on activities and achievements to-date.

Any additional relevant information or support material may be included with the application.

Latest Winners

Congratulations to the Winners of the CSL Behring Europe LEAD Grant Programme 2023!

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

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

Associazione Immunodeficienze Primitive: Increase plasma and blood collection programs and the extension of new-born screening for primary immunodeficiencies
Haemophilia Scotland: Advocate for and pilot a virtual specialist physiotherapy service in Scotland
Czech Society of Haemophilia: Increase awareness and education of women with bleeding disorders to support early diagnosis and optimal care
Hereditary Angioedema Association Bulgaria: Support access to prophylactic treatment by changing legislation
Polskie Stowarzyszenie Pomocy Chorym z Obrzękiem: Drive awareness and education of hereditary angioedema among young people
Alpha 1 Danmark: Advocate for equal access to AATD therapy and care in Scandinavia

We would also like to recognize the many other participants who submitted their applications to us, covering a wide range of issues, including: raising awareness on the sustainable access of immunoglobulins and need for increased plasma donations; raising awareness of women with bleeding disorders; support for holistic care; education on gene therapy; access to prophylactic treatments; and youth education and empowerment.