Information for Patients, Relatives and Patients Advocates
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A great number of people worldwide suffer from a broad array of chronic medical conditions ranging from cardiovascular diseases, cancer, diabetes, lung diseases, (auto) immune diseases, musculoskeletal and neurodegenerative diseases through to mental illnesses.
If you are one of those who are suffering, or know someone who is suffering with a chronic illness, you may have noticed that whilst for many of these medical conditions there are treatments available which help treat the symptoms, curative treatments appear to be a distant prospect. Since most of the currently prescribed and administered drugs often only alleviate the symptoms, they frequently have to be taken over long periods of time, or more often than not, for the rest of the person’s life.
Research in the field of chronic diseases has progressed tremendously over the last few decades, but we do not always know the full story about how and why a disease has developed. Or if we do understand how a disease has developed, we may not yet have the tools available to address the specific problems that have led to the development of the disease.
One of the missions of the RESTORE initiative is to help patients and relatives find out information regarding effective therapy options that may help restore patients’ health, not just treat the symptoms of the disease.
Chronic diseases are complex – they frequently involve many processes in the body and can affect multiple organs. In the past, medicines have been developed that often target just a small part of the overall disease, treating symptoms rather than the root cause of a disease. For example, the active ingredient in a pill is usually a small molecule (a tiny chemical entity), that interferes with or inhibits a particular process in the body, but does not correct the underlying issue. Additionally, these small molecules generally only stay in the body for a few hours before they are excreted, so that the patient must routinely take a pill. In the last thirty years we have advanced from small molecules (often chemicals) to “large molecules” - more complex, biologically derived drugs that are often more potent, stay in the body for longer periods of time and usually reach their targets more efficiently than their small molecule predecessors. However, these therapies frequently still only treat some aspects of a disease.
We at RESTORE are working on treating the underlying causes of diseases using Advanced Therapies, which include gene therapy, cell therapy and tissue engineering approaches. Advanced Therapies, or “living drugs” are unlike any conventional drug and seek to not only alleviate symptoms of a disease, but to correct or remove the disease causing agent or agents, and to restore normal function. Such disease causing agents could be something as tiny as a faulty gene or as large as an area of diseased tissue.
These Advanced Therapies are already a reality – people are being cured of diseases that were previously considered incurable, however so far only a few therapies have reached the market and therefore only a small number of patients have benefitted from them. Major challenges still face the implementation of Advanced Therapies into clinical practice and their wider accessibility as treatment options for patients with chronic diseases, challenges which RESTORE are aiming to tackle.
The “Restore-Health by Advanced Therapies” Initiative is on a mission to pave the way to the reality of every European patient with a chronic disease having access to Advanced Therapies. The European Commission supports the vision of RESTORE and has awarded the initiative with 1 million Euros funding to allow the development of an in-depth concept that identifies and specifies the necessary steps on the road to making Advanced Therapy Medicinal Products a reality for all patients in Europe struggling with chronic diseases.
The RESTORE core team, coordinated by Prof. Dr. Hans-Dieter Volk, is composed of eminent experts in basic research, clinical research and biotechnology, and is backed by an international and interdisciplinary community of around 300 stakeholders from around the world. Those representatives from basic and clinical science, industry, non-profit organisations and patient advocates have recognized the importance of the mission of RESTORE and are supporting the initiative with their expertise.
A key part of this mission is the development of technologies that will enable the reproducible and economically feasible manufacturing of Advanced Therapies. Patient-centered clinical research in compliance with the highest quality and ethical standards is an important part of the development of such technologies. Furthermore, RESTORE is devoted to building an international network, with concerted efforts across Europe that support the research, clinical development and clinical trial phases of Advanced Therapy products. This includes the facilitation of communication between scientific, clinical and health-care representatives and improved interaction with the public, including patients, patient relatives and patient advocates, thereby broadening the understanding and acceptance of Advanced Therapies and accelerating their availability to you the patients.
The RESTORE community puts special emphasis on a strong connection to patients, relatives and patients advocates promoting information exchange and education about the key content and progress of the mission “Restore-Health by Advanced Therapies”. RESTORE intends to provide an international forum for the informed discussion of the challenges and benefits of research, development and application of Advanced Therapy Medicinal Products.
Although you, the patients, are the focus of our work, we cannot treat you here at RESTORE.
Treatment can be sought at clinics and centers speciali<ed in treating your disease. More information about Advanced Therapies and clinical trials can be found at the websites listed at the bottom of this page. Additionally you will also find links to pages for foundations, patient organizations and forums providing support and allowing communication and exchange of information with other patients in similar situations.
If you have any specific question concerning Advanced Therapies in chronic diseases, please contact us by contact form (below). Our team will respond as quickly as possible or forward your request to the appropriate expert from the RESTORE community.
Regional and international meetings for patients and patient organizations will be held to facilitate the communication between the RESTORE team and patients. You can find information about all upcoming events in advance on the RESTORE website (Restore News).
Weblinks for chronic disease patients, relatives and patients advocates: