Believing that patients are their own best advocates, CSL Behring has awarded five organizations across Europe €10,000 Local Empowerment for Advocacy Development (LEAD) grants.
The groups, representing patients in France, Italy, Slovakia, Spain and Sweden, submitted winning proposals to tackle complex legislative and regulatory public policy issues. They’ll use the funds to do research, compile reports, organize patient meetings and create educational materials – all with the goal of raising awareness about rare conditions. CSL Behring’s LEAD grant program recognizes that patients are best placed to understand their condition and identify the barriers they face to securing treatment.
“The quality of the applications for these grants has been outstanding and it is a pleasure to be able to help support the winning patient organizations to fulfill their advocacy aims,” said Lutz Bonacker, Senior Vice President and General Manager of Commercial Operations in Europe.
The grants open up creative possibilities, including production of a documentary by the Italian Voluntary Association for Hereditary Angioedema and Other Rare Forms of Angioedema (AAEE). The group will use the video to demonstrate how critical treatment is for someone who has Hereditary Angioedema (HAE), which causes unpredictable and potentially fatal swelling episodes.
Other winners include:
- Imunodeficit.sk. The Slovak Association of Patients with Primary Immunodeficiency sought funding to address the ongoing lack of awareness in Slovakia, relating to the importance of plasma donation and public understanding about the condition. The patient advocacy group wants to compile a financial and legislative report to shed light on why Slovakia has no plasma donor centers and to raise awareness relating to the importance of plasma donation in general.
- Alfa-1 Sverige. The aim of the national Swedish Alpha 1 Antitrypsin Association is to grow the visibility of the organization and increase support to its members, with a view to ensuring a more effective dissemination of information about Alpha 1 Antitrypsin Deficiency (AATD). The grant will go towards launching a patient focus fair, together with supporting local meetings across the country.
- AFNP (Association Française contre les neuropathies périphériques). Improving the access of patients with chronic inflammatory demyelinating polyneuropathy (CIDP) to plasma protein therapies (PPTs) is the aspiration of French Association for Peripheral Neuropathies. The patient organization applied for the grant to support it in the mapping of French stakeholders and policy issues and to aid in the development and dissemination of position papers.
- Alfa-1 de España. Spain’s Alpha 1 Antitrypsin Association filed its grant application to enable it to collaborate more closely with its community pharmacy, so that it could disseminate information about Alpha 1 Antitrypsin Deficiency (AATD) more effectively. It hopes this will help to promote diagnosis, the adoption of early lifestyle changes and access to treatment.
The 2020 awards mark the first time CSL Behring has given LEAD grants in Europe. The field was competitive and groups that did not win this year are encouraged to apply again when grant applications for 2021 open in the fall. Learn more about the LEAD grant program.