Our group
Relations with Patients’ Associations
Patients’ associations are key contributors to the dissemination of information on pathologies and the management of rare diseases. Patients themselves in many cases, association representatives fight to drive research forward, speed up the diagnostic process, make access to care easier and inform individuals about their rights.
By creating a network of solidarity and listening, patients’ associations help sufferers come out of isolation and make their families aware of these little known and poorly understood diseases. To assist them in their mission, LFB supports them in line with the best practices drawn up by the European Federation of Pharmaceutical Industries and Associations (EFPIA)
In 2010 the LFB group funded projects and/or granted donations or subsidies to the following patients’ associations.
French associations
ADAAT
Supporting the French association for alpha-1 antitrypsin deficient patients since 2008, LFB gave the association financial support in 2010 for the organisation of a patients’ information meeting.
AFH
www.afh.asso.fr/pages/index.php
LFB has supported the French hemophiliacs’ association since 2006. In 2010 it provided financial support for the preparation of the World Federation of Hemophilia Congress, to be held in Paris in 2012, under a three-year agreement on the issue (2009-2011 inclusive).
AMR
www.alliance-maladies-rares.org
LFB’s partnership with the rare diseases alliance dates back to 2003. In 2010 LFB renewed its financial support for training on listening and communicating to help the association’s members in their daily work.
LFB also supports the reproduction of support material designed by the Alliance with LFB’s initial help to raise awareness of rare diseases among schoolchildren.
IRIS
IRIS is an association of patients with primary immunodeficiency that LFB has supported since 1998. Since 2005, LFB has provided annual support for the “Spectacles à l’hôpital” programme which consists of organising shows for children in five French hospitals every year with the help of local arts companies.
LFB also supported the production and circulation of the 3rd version of 10,000 “Merci pour la vie” posters thanking French blood donors for the donations used to make the immunoglobulins needed by thousands of primary immunodeficiency patients in France.
In 2010, LFB paid IRIS its annual operating subsidy.
International associations
WFH – World Federation of Hemophilia
Since 2006, the LFB Group has been supporting WFH. In 2010, several WFH projects received support from the LFB Group, such as initiatives on a better acknowledgement of rare diseases or improving diagnosis of rare coagulation disorders. The LFB Group also was "Gold Sponsor" of the WFH international congress that took place in Buenos Aires in July 2010.
EURORDIS – Rare Disease Patients in Europe
EURORDIS is a patient-run alliance of patients’ associations and active individuals in the field of rare diseases.
The alliance’s mission is to build a robust, Europe-wide community of patient associations and individuals involved in rare diseases, have their voices heard on a European level and, directly or indirectly, oppose the weight of rare diseases in their lives.
As an Emerald member of EURORDIS’ Round Table of Companies (ERTC), LFB Biomédicaments gave EURORDIS financial support for its activities in both 2009 and 2010.