Draft Press Release 10/0307

Patient Power, a new revolution

Patients intend to play an active role as “Expert Patient”

Lyon, France – March 13th 2007 – BioVision press conference

For centuries patients have been passive but not anymore. It’s their body, it’s their life. They don’t want to lie down any longer. They want to get into the driver’s seat. They want to get involved in the process of decision making. About their medicines, about their treatments, about their bodies, about their lives.

Life Sciences have made an enormous contribution to better health and a more sustainable environment. A new horizon has emerged for many patients involved in so far incurable diseases. Today, many other patients benefit from the development of new or better treatments. Moreover science has brought greater options for prevention and health maintenance.

Nevertheless, 8 million children - 6% of total births worldwide - are born every year with a serious genetic or partially genetic defect and over 3 million of them will die before the age of 5 years. Without adequate care the majority of the rest will be disabled for life. These figures could be reduced by 50% with the present knowledge and techniques.

Moreover there is a big gap between the sophisticated achievements of science and the impressive progress in molecular technologies on the one hand and the enormous need in many millions of families burdened everyday by lifelong serious and genetic/chronic diseases.

Families involved in these diseases, not wanting to be part of the problem but part of the solution, have united and organised themselves on national and international levels. Patient organisations have a great deal of expertise about chronic diseases, and they intend to play a role as “Expert Patient” in close cooperation with science, doctors, policymakers and industry.

Parent and patient groups are now in a position to play an active role in bridging the gap between science and the unmet needs in society. They play a role in healthcare policy, in the promotion of genetic services, in the drug development process, in regulatory affairs and in promoting access to treatment. They are also alert to issues such as quality, safety, equity and sustainability. Their voice in the scientific, political and media arenas is both recognised and appreciated.

1 A voice of the millions of individuals and families

Patrick Terry, President of the International Genetic Alliance (IGA) declared at BioVision 2007: “The goal of the IGA is to give a voice to the millions of individuals and families all over the world living with genetic conditions. Bringing this voice to the table, particularly at BioVision, provides a place for these families to manage science and biotechnology issues along with their ethical, legal, and cultural implications. Without the input of this particular group of stakeholders, society will not be able to readily translate research outcomes into education, information, prevention and therapy. Research in the field of genetics and biotechnology will be promoted and supported with these stakeholders leading society’s dialog about this new science and technology. In order to keep up with the accelerating rate of developments and to assure they are linked with the public acceptance, partnership with science and industry is essential for the International Genetic Alliance.”

The International Genetic Alliance of parents and patient organisations (IGA)

It was in the exciting atmosphere of BioVision 2001 that patient representatives met each other and decided to collaborate more closely. At BioVision in 2003, the International Genetic Alliance of parent and patient organisations (IGA) was officially founded.

The IGA is now an alliance of continental association with a total membership of over 2000 parent and patient organisations from all over the world. Their vision is to seek a world where diseases are understood, prevented, treated, improved and cured and that people who are affected are well supported. The IGA’s mission is to promote medical genetic services, research, technologies, and access to information, in order to alleviate the burden of genetic conditions for individuals, families and communities.

The IGA programme includes activities such as mobilising and enabling family organisations all over the world to signal bottlenecks in healthcare and research, to voice their interests on the national and international level and to contribute to finding solutions for unmet needs. It also includes activity in support of research into prevention and treatment of chronic/genetic conditions, contributions to the translation of biotechnological discoveries into accessible and effective medical products, informational and educational programs. IGA is engaged in various collaborations with scientific and industrial groups such as the World Alliance of Organizations for Prevention and Treatment of Genetic Conditions, International Federation of Human Genetic Societies, BioVision, EuropaBio and DSM.

The continental members of IGA have established partnerships with other societies, institutions and companies. The European Genetic Alliances’ Network has had a solid partnership for many years with EuropaBio focusing on ethical guidelines and on promotion of new innovative drugs and on strengthening initiatives of patient organisations in their fight against bottlenecks in research & development of treatments.

BioVision in Lyon, France is where IGA was first established. It is the forum selected to release results of a study about the achievements of patient organisations united under the IGA. The title of the book “It is MY life, a new revolution” indicates what is at stake for the patients: their life. Moreover the book reports what they have achieved. Patient power. A new revolution.

2 It is MY Life, a new revolution

In this book a new revolution is being portrayed. Well-known Dutch science-writer Simon Rozendaal interviewed twelve patients with rare hereditary diseases from all over the world who testify to their determinedness to take charge. All of them contributed to research into serious diseases and development of medical treatments. The interviewees are amongst others Cees Smit (The Netherlands), Patrick Terry (U.S.A.), Tsveta Schyns (Austria), Dianne Petrie (Australia), Grzegorz Wegrzyn (Poland) and Michael Griffith (Ireland).

The stories tell how these people managed their own life and how they guided other patients by founding organizations, by contributing to the drug development process for their disease. In one case a biotechnology firm was started, where the patient organization became owner of the patent of the gene in question. These portraits show that patients are a serious partner in the dialogue with politicians, researchers and industry and are very important in their role as ‘expert patients’. Patient organizations have great expertise about their diseases and can play an important role in therapy development and disease management. Especially with rare diseases patient organizations can play a big role. International cooperation between the patient organizations on the one hand and with science and industry on the other, is therefore necessary. The publication is further proof of the rapidly increasing, very committed and very (pro-) active role of patient organizations towards the route to treatments. ------It is MY life Can be ordered at your bookstore or at the European Genetic Alliances’ Network (EGAN) Price: 16 €; 21 US$$ ISBN: 978.90.5911.538.5 Information and orders can be placed at: [email protected] ------

IGA Secretariat Helios, NL 2592 CV 130, The Hague The Netherlands Tel.: +31 35 603 40 52 +31 35 683 19 20 +31 51331020 E-mail: [email protected]