CSL Behring has strengthened its partnership with the European Organisation for Rare Diseases, EURORDIS – a patient-driven alliance of patient organisations and individuals active in the field of rare diseases. Recently, CSL Behring joined the Eurordis Round Table of Companies, established as a long-term educational relationship between Eurordis and manufacturers of orphan drugs or providers of treatments and health services for people living with rare diseases. Eurordis’ mission is to build a strong pan-European community of patient organisations for people living with rare diseases, to be their voice at the European policy level, and – directly or indirectly – to fight against the impact of rare diseaseson their lives. More

CSL Behring Attends European Patient Forum’s Spring Conference on Health Literacy

As part of increased advocacy activities and publicprivate partnerships, CSL Behring established contacts to the European Patient Forum (EPF) and participated in the organisation’s annual spring conference. The conference focused on health literacy. Given its inclusion in the EU Health Strategy, this is an important topic for representatives from patient organisations across the EU and other healthcare stakeholders. More

Plasma Companies Respond to EU Commission Consultation on Patient Information

The EU Commission currently collects best practices regarding how physicians should communicate with patients about medicinal products. This procedure follows-up on a legal proposal (EU Communication and staff working document) adopted in December 2007 and encompasses the perspectives of a wide range of stakeholders. More

PPTA Position Paper

The Plasma Protein Therapeutics Association (PPTA)1 welcomes the European Commission’s Public Consultation on a Legal Proposal for Information to Patients and is pleased to submit here below key recommendations and ideas on behalf of the plasma protein industry. More

EU Directive on Cross-Border Healthcare Continuously Delayed

The EU draft Directive on Cross-Border Healthcare, which had been scheduled to be launched by the Commission in December 2007, was unfortunately delayed due to disagreement in the political institutions. This directive protects the basic rights of patients who travel to other EU Member States in order to receive medical treatment. More

New Health Commissioner Appointed

Mrs. Androula Vassiliou has taken over as European Union (EU) Health Commissioner following the resignation of Markos Kyprianou. Mrs. Vassiliou, a lawyer, was a Member of the House of Representatives of Cyprus for two terms until 2006, and Vice-President of the European Liberal Democrats and Reform Party from 2001 to 2006. She also chairs the board of trustees of the Cyprus Oncology Centre. More

Rare Diseases Subject to Public Hearing in the European Parliament

The European Organisation for Rare Diseases (EURORDIS) organized a Public Hearing on Rare Diseases co-hosted by European Parliamentarians Frédérique Ries and Jules Maaten, to celebrate Rare Disease Day on 29 February. The hearing emphasised the need for entres of Expertise and European Reference Networks to enhance information flow and improve the organisational structure of patient-centred care. More

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Winter 2007/08

Voluntary Compensated Donations are Consistent with EU Blood Directive

Voluntary compensated plasma donations remain an important public policy issue. The European Commission recently affirmed its support for voluntary compensated plasma donations. However, this policy issue continues to be questioned by some Members of the European Parliament (MEP). As a result, in conversations with stakeholders such as the Directorate General for Health and Consumer Affairs (DG Sanco), CSL Behring Public Affairs Europe stresses the need for compensated plasma donations in order to ensure future access to plasma protein therapies for patients. More

2007 European Conference on Rare Diseases Focuses on Patients’ Needs

“Patients: the heart of rare disease policy development” was the theme of this year’s European Conference on Rare Diseases (ECRD), which took place in Lisbon, Portugal on 27 and 28 November 2007. This biennial conference was organised by EURORDIS and its partners, under the patronage of the Portuguese Ministry of Health, operating within the official agenda of the Portuguese EU Council Presidency, and supported by the European Commission. More

European Commission Issues Public Consultation on Rare Diseases

High-quality diagnosis, treatment and information for people suffering from rare diseases are priority issues for the European Commission. In order to gather information and expertise on issues facing rare disease communities, the European Commission recently issued a consultation document entitled “Rare Diseases: Europe’s challenges.” This document outlines 14 key questions about rare diseases. Interested parties are invited to comment on and respond to these questions and to explore other relevant issues, if necessary. More

Plasma Companies in Europe Adopt New Charter

Member companies of the Plasma Protein Therapeutics Association (PPTA) recently developed a charter for cooperation with external organizations, mainly patient and physician organizations. Increasingly, such charters are being used as policy documents by trade associations to optimize transparency and formalize their relations with stakeholder organizations. The PPTA charter was established in conjunction with the Plasma Protein Users Group and approved by the PPTA’s European Board of Directors in November 2007. Thus, from this point forward, all member companies are committed to adhering to the defined policy framework. More

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