>Contents>Retina International
President of Retina International
Zürich
Retina International (formerly International Retinitis Pigmentosa Association) is a voluntary charitable umbrella organization of more than 40 national patient organizations for people with retinal degenerative diseases such as retinitis pigmentosa (RP), macular degeneration, Usher syndrome and allied retinal dystrophies, as well as their families and friends (explanation). The two main objectives of Retina International are:
| 1. | To promote and fund research directed at finding the cause and developing a treatment and, ultimately, a cure for retinal degenerative diseases, especially the inherited forms. |
| 2. | To foster mutual support among its members, families and friends. |
Furthermore, the organization strives to promote public awareness by providing and exchanging information on retinal degenerative diseases, and to support the establishment of new patient societies.
The first two RP organizations were founded simultaneously and independently in Finland and the USA. People felt the need for more communication and were concerned that not enough research was being done to find a cure for RP. A worldwide movement was thus born and, in 1978, nine national organizations joined together and founded the International Retinitis Pigmentosa Association. Later on, the organization decided to broaden the scope of its activities to include all forms of retinal degenerative conditions and changing the name to Retina International was the logical consequence. The Retina International member organizations represent over 140,000 members worldwide and raise more than USD 25 million per year, which is invested in research. Each member association and Retina International are advised by their own scientific and medical advisory boards.
Impact of Retinal Degenerative Diseases
Retinal degenerative diseases affect over 10 million people in Europe. Age-related macular degeneration is the major cause of severe visual impairment in the population over 60 years of age and is on the increase. The reasons for this increase are unknown. Inherited forms of retinal degenerative diseases such as RP and Usher syndrome usually affect peripheral vision causing night-blindness and tunnel vision. The age of onset in the majority of cases is during the second decade of life. This has severe implications during the patient's most active years, resulting in underemployment, early retirement and severe financial hardship for the affected families.The Current State of Research
Over the last few years, research into the cellular and genetic defects that cause retinal cell death has made great progress. For some inherited retinal diseases, the affected genes and proteins have been identified. The challenge now is to understand the connection between the abnormal function of individual proteins and the death of photoreceptor cells as well as to develop drug therapies that prevent or delay this process. Several new forms of biological treatment approaches are currently being developed which have shown some efficacy in animal models but have still to be tested for long-term effectiveness and safety before they can be studied in humans. These include the use of growth factors to delay cell death; cell transplantation, i.e. replacing photorector cells or retinal pigment epithelium cells with new healthy ones; and gene therapy which aims at replacing the mutated genes with nondefective genes. With more and more gene mutations being identified, many researchers consider gene therapy a promising approach for the future; however, there are still many obstacles to overcome, e.g. how to transfer DNA of the healthy gene into the diseased cells. Further investigations focus on the development and assessment of neuroretinal implants (microchips), which would receive visual information transmitted from a camera mounted on a pair of glasses and thus restore rudimentary vision. The next big step will be the transfer of these basic findings into clinical trials.Challenges for the Member Organizations
Retina International has emerged into the 21st century ready for change and adaptation. This century promises new and exciting discoveries thanks to the recent progress of research, and there is optimism that the next few decades will bring about a cure for retinal degenerative diseases. However, this is not the time to sit back! On the contrary, all efforts must be accelerated to meet the following challenges:Bringing research from university laboratories into those of the pharmaceutical industry: It is important to develop strategies to lobby for the necessary funds for clinical trials which swallow up huge sums of money.
Patient recruitment: To access those patients who fit the criteria for the first clinical trials, national member organizations must actively promote reliable and updated patient registries.
Improved cooperation and solidarity between the member organizations: Retina International is a growing organization with members from different economic and cultural backgrounds whose needs will be even more diverse in the future. The experienced, well-organized and well-established national organizations should support the newly emerging ones.
For more information please contact
Retina International or one of its member organizations:
| Retina International Ausstellungsstrasse 36 CH–8005 Zürich (Switzerland) |
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| Tel.: | +41 1 444 10 77 | |
| Fax: | +41 1 444 10 70 | |
| E-mail: | cfasser@e-link.ch | |
| Homepage: | www.retina-international.org | |
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