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CSL Behring Awards Three-Year Educational Grant for New European Rare Diseases Policy Project

Patients discuss preferred policy scenarios.
Recently, CSL Behring awarded a three-year educational grant to EURORDIS, the European Organisation for Rare Diseases, for a new European rare diseases policy project. Of the three involved companies, CSL Behring is the only company in the plasma protein therapeutics industry. The other two companies are Novartis and Sigma Tau Pharmaceuticals.

This project is the first European initiative designed to systematically collect patient opinions on rare disease policies. The purpose of the project is to build consensus on preferred public health policy scenarios, which is aligned with the CSL Behring commitment to saving lives and improving the quality of life for people with serious and rare diseases.

The name of the project is Patients' Consensus on Preferred Policy Scenarios for Rare Diseases or POLKA. POLKA is managed by EURORDIS, the European Organisation for Rare Diseases, and supported by the European Commission. POLKA will facilitate the consolidation of the European rare disease community in order to build consensus on preferred public health policy scenarios for rare diseases. This is the first project of its kind that systematically tracks the actual preferences of European rare disease patients. Using a variety of structured deliberation tools, the project will launch patient debates on five to seven carefully chosen, rare disease public health policy themes. During the debates, patients will be introduced to policy scenarios and subsequently asked to vote. The voting will take place at the 5th European Conference on Rare Diseases (ECRD 2010) in Poland, the first of its kind in an Eastern European country. The rare disease topics and policy scenario outcomes from the debates and voting will be presented at events such as annual membership meetings and general assemblies of EURORDIS, meetings of National Alliances and of project partners.

Rare disease material will be developed by experts and patient representatives for use in POLKA. Materials will include information packs, fact sheets, and possible policy scenarios. Moderators in various EU Member States will organise debates with up to eight patient representatives per debate. In total, the project should facilitate between 600 and 1000 discussions across 27 countries, in 21 languages, with a minimum of 80 participants per country. The project will also support the implementation of the EU Policy for Reference Networks and propose additional recommendations to further support the establishment of guidelines for best practices in treatment. In addition, the project will share knowledge on rare diseases, together with evaluation of performance.

POLKA's Method:

DECIDE POLKA's rare disease public health policy themes will be launched using a variety of methods such as the DECIDE* or Delphi-like methods. Each debate will introduce a policy scenario and will ask patients to vote. In DECIDE, debates are organised and structured using a ‘kit' that facilitates inclusion of all points of view, and at the same time provides the necessary scientific background to engage in informed discussions.

http://www.playdecide.org
*DECIDE - The Game (including kits of information to download in many languages)

POLKA's Partners

POLKA is a EURORDIS project over three years (September 2008 – September 2011) supported by the European Commission and a Donors Committee comprised of three pharmaceutical companies: CSL Behring, Novartis and Sigma Tau Pharmaceuticals.

Patient Commitment
CSL Behring is committed to saving lives and improving the quality of life for people with rare and serious diseases, worldwide. This commitment is reflected in the company's support of programs and activities for patients with rare diseases including bleeding disorders, primary immune deficiencies and Alpha1- proteinase inhibitor deficiencies.

 

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