Why do diseases skip generations
Press release from 09/26/2018Gene diagnoses important for therapy development
Demands of the patient association PRO RETINA Germany e.V. for the International Day of the Retina - "World Retina Day" - on 29.September 2018
The last Saturday in September has traditionally been used by organizations and associations since 1994 to draw attention to the concerns of people who are affected by retinal diseases. Retinal diseases such as macular degeneration (MD) or retinitis pigmentosa (RP) are a major cause of vision loss and blindness worldwide. Even though basic research has made considerable progress in recent years and developments in the field of molecular genetics are constantly advancing, there are often no reliable therapies that cure the diseases for many sufferers.
Retina International (RI) claims for Retina Day
The umbrella organization to which PRO RETINA Deutschland e. V., on the occasion of the day of action, calls on the actors in the national health systems to enable those affected by retinal degenerations worldwide to have fair access to genetic test procedures. This is important because knowledge of the genes involved makes it possible to better understand the disease and, if necessary, to take measures at an early stage to influence its progression. Some hereditary diseases appear in every generation, while others skip generations and are passed on covertly, so to speak. The same disease usually affects each patient differently.
Professor Dr. med. Hanno J. Bolz, Director of the Senckenberg Center for Human Genetics in Frankfurt, explains: “In patients with a hereditary retinal disease, the respective genetic defect can now be found in most cases. The genetic diagnosis allows an exact classification of the disease - among other things, whether a syndrome that goes beyond retinal degeneration is present and other specialists are called in, for example to assess the kidneys, blood lipids, etc. (depending on the syndrome) for adequate care of the patient have to. There is also hope that knowledge of the individual genetic defect will increasingly open up therapeutic options in the near future. Last but not least, the risk of illness in relatives or the risk of recurrence in future children of those affected can be precisely stated. "
PRO RETINA patient symposia at the DOG
This year, the 116th DOG Congress, the largest congress of ophthalmologists in Germany (main theme: "Ophthalmology 4.0"), will take place in Bonn at the same time as World Retina Day. The congress begins on Thursday, September 27th and ends with the “Digital Sunday” on September 30th. PRO RETINA is represented with two highly interesting patient symposia:
- The event on Friday (September 28th) starts at 12 noon and is titled: Retinal Degenerations - Insights and Outlooks - Where Are We Today? What does the future hold? Rooms: Nairobi 3 & 4, admission from 11.45 a.m., South Entrance II
- On Sunday (September 30th) it will start at 12.30 p.m. "Digital Vision" - seeing the future. The focus is on the question of how digitalization can create artificial vision. Experts from the industry present the existing possibilities of digital vision (for example prostheses that are placed in the eye, electronic aids with face recognition, glasses with reading functions, etc.) and dare to take a look into the digital future. Rooms: Bangkok 1 & 2, admission from 12.15 p.m., entrance to the Rhine plain
Interested parties are cordially invited to attend the free events at World Conference Center Bonn (WCCB), United Nations Square 2, 53113 Bonn to visit. The building is designed to be barrier-free in many ways and has, among other things, a tactile guidance system.
The brochure “Genetics and Heredity. Information on hereditary diseases of the retina “of PRO RETINA can be requested from the PRO RETINA office.
You can find more information about PRO RETINA Deutschland e.V. and its diverse self-help activities at: www.pro-retina.de.
About PRO RETINA Deutschland e.V.
PRO RETINA Deutschland e.V., a self-help association for people with retinal degeneration, was founded 40 years ago by those affected and their relatives as a non-profit organization to help themselves. PRO RETINA is a nationwide organization with more than 50 regional groups and around 6,000 members.
We offer information and advice and see ourselves as representing the interests of patients in public and health policy. In order to make a contribution to the development of effective therapies, PRO RETINA Deutschland e. V. also in research funding. PRO RETINA would like to help all people who are threatened with impaired vision or blindness due to retinal damage to lead a self-determined life through prevention, therapy and coping with them.
Last changed on 09/26/2018 11:30 AM
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