World Retina day will take place on Saturday September the 25th 2010. On world retina Day this year, affected patients all over the world are asking you to join them and play your part in efforts to reduce the huge emotional, social and economic effects of sight loss and blindness from diseases such as macular degeneration, retinitis pigmentosa and ushers syndrome.
A family of inherited retinal Diseases cause irreversible degeneration of the retina over time. However, hope is now very definitely in sight if we can play our part in turning hope into reality.
With leading researchers and clinicians at the helm of a number of successful research projects in vision and ophthalmology, we are confident that a cure or therapy for these conditions is within our reach. Now with more projects reaching human clinical trial stage patient involvement is more crucial then ever to the development of potential therapies. Further, we need patients, their families and other supporters to play their part in making sure successfully -developed treatments are widely accessible to affected people.
On World Retina Day, Retina International, an umbrella group of patient-led organisations concerned with Inherited Retinal Degenerations from all over the world will call on governments to establish patient registries. Without these registries potential treatments and cures can not be further developed. Clinical trials face major financial and legislative difficulties and it must be the task of each countries government to become involved in the process from proper genetic diagnosis and genotyping through to establishment of registries. If this issue is not addressed now millions of people around the world and future generations may never have access to treatments. The journey travelled by the international retinal research community to reach these exciting times has been a very long one. It is now time for patients, research funding authorities and health administrators to play their part in ensuring we reach our destination. With so many clinical trials on-going and more approaching this vital stage in their development, patients now have a real hope of a brighter future.
While we have an important role to play in making treatments a reality, we also have an important role to play in preventing blindness caused by conditions such as diabetic retinopathy and macular degeneration.
Macular Degeneration, the most common disease within the family of retinal disorders, affects more than 30 million people worldwide. The global cost of the disease according to a recent report by AMD Alliance International (AMDAI) is estimated at $343 billion, underscoring the need for swift actions to raise awareness of prevention and treatment options. AMD can be prevented or slowed down if a person takes action to keep his or her vision healthy. Along with regular eye tests, the first step is a healthy lifestyle, (Don`t smoke, take exercise, eat healthily and use sunglasses in bright sunlight). Specially formulated vitamins for those affected by the disease may help, and effective clinically-approved treatments are available for the most severe form of AMD. AMD can be avoided by addressing risk factors such as poor diet, smoking and prolonged exposure to harmful rays in sunlight. It is also important to be aware of any family history of the condition. Even after the onset, the advance of blindness can be slowed if suitable measures are taken. These key pieces of knowledge can save the vision of millions of people, and that is what makes this campaign during AMD Week so critical.
“The situation is alarming,” said Christina Fasser – President of Retina International “Too many people remain unaware of the risk factors associated with AMD. There are some simple lifestyle changes that can halt or slow the advance of the vision loss that occurs as a result of this condition but awareness is so low that those most at risk are not receiving this vital message.”
“Our objective this week is to encourage everyone over the age of 50 to see an eye doctor at least once every two years; even if their vision seems perfect,” she added “Early detection is the most important factor in preventing or slowing the advance of AMD.”
Millions of adults and children are waiting for treatment for retinal inherited disease and millions more could prevent their sight loss with access to appropriate information. With treatment options becoming a reality and a better understanding of how to prevent blindness, there is no better time than now for you to play your part.
For further information contact Christina Fasser at Retina International Phone +41 (0)44 444 10 77 Fax +41 (0)44 444 10 70E-mail: firstname.lastname@example.org www.retina.ch www.retina-international.org