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 2012 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 2012 for the organization of the annual information weekend for the patients’ family.
AF3M
LFB has supported the AF3M since 2011 and in 2012 too, for the organization of the annual national day dedicated to the multiple myeloma.
AFH
www.afh.asso.fr/pages/index.php
LFB has supported the French hemophiliacs’ association for years, notably the World Federation of Hemophilia Congress, which was from 8th to 12th of July in Paris in 2012.
AFNP
http://www.neuropathies-peripheriques.org/
The LFB group has supported the AFNP since 2011 and supported in 2012 the realization of the corporate brochure of the association.
AMR
www.alliance-maladies-rares.org
LFB’s partnership with the rare diseases alliance dates back to 2003. In 2012 LFB renewed its financial support for training on listening and communicating to help the association’s members in their daily work.
Fondation Greffe de Vie – Association Laurette Fugain
http://www.greffedevie.fr/ - http://www.laurettefugain.org/
In 2012 LFB is supporting the awareness about giving (donating blood, plasma, and platelets) and of communication to patients, among high school students and the broader public.
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” program which consists of organizing shows for children in five French hospitals every year with the help of local arts companies.
In 2012 the LFB supported the organization of the national congress of the association and the realization of newsletters, “Fil d’IRIS”.
International associations
IPOPI
LFB has supported IPOPI for the realization and the development of its web site.
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 BIOMEDICAMENTS has given EURORDIS financial support for its activities since 2010.
WFH – World Federation of Hemophilia
Since 2006, the LFB Group has been supporting WFH. In 2011, 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 "Platinum Sponsor" of the WFH international congress that took place in Paris in July 2012.