Report 2009 and 2010
EGAN was founded in 2005. Its purposes are:
- to work together with other existing European patient alliances and organizations to build a unified approach to genetic and biotechnological issues from the patient perspective, whilst respecting the interests of partnering and non-partnering organizations,
- public advocacy and influence: articulating a clear, patient focused perspective on human genetic and medical biotechnological issues, including their ethical, legal, psychosocial and cultural implications in the European political, scientific and commercial arena,
- to support and facilitate individual patient organizations and alliances in their activities for opinion shaping, advocacy and influencing healthcare policies on a national and European level regarding disease specific issues,
- to provide a patient platform for opinion making and collective priority setting, communication and pro-active intervention in relevant genetic and biotechnological issues and
- to present the patient perspective related to genetics and biotechnology in European projects, societies, expert committees, working groups etc.
As a network organisation, EGAN works by both voluntary advocacy by its board and membership delegates, and by actively involving its membership in applying for and participating in European and international projects.
During recent years, EGAN had become increasingly active in policy issues that are not only relevant to genetic disease, but also to other serious diseases. Therefore, the board decided on 20 February 2009 to rebrand EGAN externally as the ‘Patients Network for Medical Research and Health’.
Composition of the board
In 2009 and 2010, the board of EGAN had the following members:
Mr. Alastair Kent, President Genetic, Alliance UK
Mr. Cor Oosterwijk, Secretary general, Dutch Genetic Alliance (VSOP)
Mr. Rod Mitchell, Treasurer, European Federation of Crohn's and
Ulcerative Colitis Associations (EFCCA)
Mr. Michael Livingstone, Member Heart Europe / International FH Foundation
Mr. Micheal Griffith, Member, Fighting Blindness
Mr. Grzegorz Wegrzyn, Member, Central and East European Genetic
Advocacy in the European political arena took place in the fields of, amongst others, genetic testing, animal research, clinical research, the stem cells directive, advanced therapies and health technology assessment (HTA). Examples include:
In November 2009, an EGAN-developed letter, signed by several European umbrella patients’ organisations, was sent to the EP AGRI Committee concerning the review of directive 86/609/EEC on the protection of animals used for experimental and other scientific purposes.
In January 2010, in a letter to Mr. Dalli, Commissioner-designate for Health and Consumer Policy, EGAN expressed its deepest concern with the implementation of EU legislation on health claims on food (EC Regulation 1924/2006).
In September 2010, a statement on Active Pharmaceutical Ingredients was published.
PatientPartner. The reporting period of this report covered a large part of the PatientPartner project. This started in May 2009. EGAN, with EFGCP, VSOP and Genetic Alliance UK are the partners in the EU FP7 project. PatientPartner stimulates partnership between patient organisations, industry and academia in clinical research (www.patientpartner-europe.eu). Very successful and well-attended workshops were organised in London, Budapest, Athens and Brussels and the main deliverables, that is guides for both patient organisations and trial sponsors, as well as an ethical code of conduct, were developed.
GenGuide. Several EGAN members participated in the FP6 project EuroGenGuide (www.eurogenguide.eu) in which protocols for participation in (genetic) data and biobanks were developed. The project ended with a successful meeting in Warsaw in November 2009 that gained a lot of media attention.
IMI. EGAN participated in the submission of a project proposal called PubTrain to the Innovative Medicines Initiative (IMI), proposing education on medicine development for patient organisations, member of ethics committees, politicians, journalists and others. Although PubTrain was the only proposal accepted in the first evaluation round in 2008, unfortunately it was rejected in the second round at the beginning of 2009. Nevertheless, in 2010 a new proposal (EUPATI) was developed in this field, which would result in a successful submission in 2011 and the project is due to start in 2012.
BBMRI. EGAN actively participated in meetings of the Stakeholder Forum of Biobanking and Biomolecular Resources Research Infrastructure (BBMRI), that resulted in a common declaration outlining the potential roles that patients and patient organizations can play in biobanking activities and addressing ethical and legal issues from the patient perspective.
Newborn screening. In 2010, the European Commission Started the EU Network of Experts on Newborn Screening. EGAN was asked to participate in this project and participate in its first Expert Meeting in Rome in March 2010.
GRIP. In 2010, EGAN became involved in the application for GRIP: Global Research in Pediatrics (www.grip-netwerk.org), an international Network of Excellence funded under the EU FP7 framework Program. The project was approved and started in 2010.
Preparing for Life. In 2010, EGAN became involved in Preparing for Life, an initiative to promote the global implementation of preconception care, initiated by EGANs member VSOP. A first international meeting took place in March 2010 at The Hague in The Netherlands, followed by the formal launch at Biovision in Lyon in March 2011.
In the reporting period, EGAN representatives were advisors in the following European Projects: TechGene (Next Generation Sequencing, FP7, www.techgene.eu).
GenCodys. EGAN, represented by Dutch Alliance VSOP, became a partner in the EU FP7 project GenCodys in 2010 (www.gencodys.eu). The project aims to unravel the genetic and molecular basis of several forms of mental retardation, as occurring both in rare and common diseases.
EPF. EGAN is a formal member of the European Patient Forum (EPF) and two EGAN board members are also members of the EPF Policy Advisory Group. In the context of PatientPartner, EGAN provided a speaker in the meeting on December 2009 in Gotenburg, Sweden, in which the results of the Value+ projects were presented. Value+ deals with the participation of patients in medical research, especially in European funded projects EGAN is also an active contributor to the EPF policy advisory group.
CEEGN. The Central and East European Genetic Network is EGANs natural partner in Central and Eastern Europe. In January 2009, both partners organised an extensive 3-day workshop to exchange information on projects and future strategies.
Eurordis. The cooperation with Eurordis resulted in, amongst other things, contributions to Eurordis congresses and meetings.
IGA. Activities in cooperation with the International Genetic Alliance (IGA) especially concerning preconception care (Preparing for Life) and Nutrition for Health.
EPPOSI. In the 2-year reporting period, the European Platform of Patients’ Organisations, Science and Industry (EPPOSI) was chaired by Mr. Kent, who is also EGAN’s president.
EFGCP. The EGAN/EFGCP Working Party ‘Patients' Roadmap to Treatment’ mission is to streamline the drug development-centred activities of both organisations and to strengthen the potential contribution of patient organisations to the European research effort. In 2010, the Working Party especially was involved in the implementation of the outcomes of the PatientPartner project. In addition, EGAN representatives participated as speakers in several EFGCP conferences.
EMA. EGAN was represented by Ms. Pauline Evers on the EMEA Committee on Orphan Medical Products (COMP) and by Mr. Alastair Kent on the Committee for Advanced Therapies (CAT). In addition, EGAN participates in the EMA Patients and Consumer Working Party (PCWP).
ESHG. EGAN was represented on two committees of the European Society of Human Genetics ESHG, namely the Genetic Services Quality Committee and the Education Committee.
ISNS. In April 2009 in Prague, EGAN and the International Society on Neonatal Screening (ISNS) signed a letter of intent, which is predicated on the recognition of the importance of neonatal screening as a public health programme in Europe and worldwide. EGAN and ISNS recognize that cooperation is needed in order to expand and optimize neonatal screening programmes and maximize the number of infants screened, in Europe and worldwide, thus improving their health.
EFPIA. Most EFPIA Thinkthank-meetings were attended by one ore more EGAN representatives.
Roche. The long-lasting relationship between EGAN and Roche (Basel, Switzerland) was continued. In January 2009 and 2010, EGAN had its annual EGAN-Roche Workshops in Basel. In 2009, ‘Exploratory development and clinical research’ was the theme, focussing on biobanking and early patient involvement in pre- clinical research. The 2010 workshop concerned the role of industry, politicians, academia and patients organisations in the stimulation of the development of innovative medical therapies. Furthermore, in April 2009 EGAN and Roche visited the Primate Research Centre in Rijswijk in The Netherlands, to exchange ideas on the responsible use of primates in research that cannot be done otherwise.
DSM. Cooperation with DSM and other nutrition companies was re-established in 2010. As a start, a Nutrition Summit was prepared for the 2011 BioVision Lyon Conference.
PSR. In October 2010, PSR and EGAN signed an intention to collaborate in the field of clinical research. PSR is a leading expert in Orphan Drug Development. Both PSR and EGAN acknowledge the importance of involving patient groups at an early stage in the development of orphan drugs and subsequent clinical study programmes. EGAN will be able to act as an intermediate partner in order to establish contacts with patient groups in Europe, whilst PSR will be able to involve those patient groups as early as possible in drug development programs. PSR and EGAN will be intensifying their relationship and will collaborate on a project-by-project basis whenever possible and appropriate.
Communication and publications
During the reporting period the EGAN/Roche working group produced information brochures (FAQs) on Biobanks, Social and Medical aspects of Medical testing, and Personalised Heath Care. Several of these FAQs were translated into non-English languages. In addition, as a result of the EU FP 7 CONSERT gene therapy project (which ended in 2008), two brochures on Gene Therapy and Ethics were produced: one for the general public and one for patient organisations.
EGANs thematic website www.biomedinvo4all.com provided information on the health themes EGAN is working on. This website is additional to the corporate website www.egan.eu.The aim of the brochures and the website is to empower patients and patient organisations to be active in those fields and their related ethical, scientific and political aspects. All FAQs and other brochures are downloadable from this website.
Finally, a new edition of the Guide to Paediatric Drug Development and Clinical Research, in which the chapter ‘Paediatric Clinical Research: The Patients' Perspective‘ is written by EGAN, appeared in 2010.
Organisational and financial issues
Statutortorily, EGAN is located in Brussels. EGAN's secretariat is located at the office of Dutch Genetic Alliance VSOP, Soest, The Netherlands.
In September 2009, EGANs new corporate website was launched.
Having no employees of its own, EGANs participation in EU projects is usually performed by employees of one or more of its members. The funding of the most elementary organisational activities, like basic administration, acquisition and fundraising, membership maintenance and outreach, all not fundable by projects, remains a matter of concern.
Our earlier Annual Reports, including detailed financial Yearly Accounts, are listed and downloadable below (PDF):
EGAN was founded in April 2005. That year, and the starting-up phase the years before, were mainly founded by the King Boudain Foundation (Belgium). These years EGAN was included in the Yearly Account of Dutch Genetic Alliance VSOP