Fighting Blindness joins with Retina International and organisations around the world to raise awareness of retinal dystrophies

September 30, 2013

Inherited retinal dystrophies such as RP, Usher syndrome, macular degeneration and allied retinal disorders continue to be significant causes of vision loss globally.

Retinal dystrophies affect more than 40 million people worldwide. The global cost of these debilitating disorders, could be as high as $US 20 billion annually, underscoring the need for swift actions to raise awareness of prevention, diagnosis and treatment options.

On world retina day, September 28 2013, Retina International with its 32 member organisations and leading eye-care organisations from 32 countries, called on patients and their friends and families, eye-care professionals, vision researchers and scientific and medical funding bodies to think about what they can do to hasten the pace of progress towards the development and worldwide availability of safe and effective treatments.

This is a crucial time for patients, clinicians and research sponsors as comprehensive diagnostic data and clinical trial data have the ability to alter the prognosis for millions of patients who are experiencing sight-loss attributable to retinal disorders.

We at Fighting Blindness know, from more than 30 years as a patient organisation, that the rate of progress towards comprehensive effective diagnosis programmes and widespread availability of treatments for retinal disorders is largely dependent on the awareness and understanding of those who can address the associated issues.

Losing vision has devastating consequences to an individual’s daily life and those affected by retinal diseases can often face loss of independence and sometimes depression. However, we can all take steps to brighten the future and reduce needless sight loss.

At present there are worldwide more than 13 different clinical trials carried out to test treatments for different inherited retinal degenerative disorders in the area of gene therapy, drugs (neuroprotective factors), stem cell therapy and artificial vision. In order to bring these trials to a positive end, the co-operation of patients is asked for. Therefore, it is important, that patients with inherited retinal degenerative disorders get access to timely and accurate diagnosis including genotyping.  Thanks to the co-operation of people with retinal degenerative disorders the first clinical trials in artificial vision have been carried out successfully and two different retinal chips received FDA and/or EMA permission to be marketed and in some countries already reimbursement is guaranteed.

“Retinal disorders are conditions that we will one day be able to treat” says Christina Fasser, president of  Retina International . “We all have an opportunity to contribute towards saving the sight of millions of people. Taking this opportunity could be as simple as providing a blood sample, writing to a research funding decision-maker or providing input into a health technology assessment process”.

Through its World Retina Day 2013 campaign, Retina International is increasing public education efforts by informing the public of diagnostic programmes, treatment development initiatives, and rehabilitation and support options that are available in the fight against blindness attributable to retinal disorders.

Anna Moran, External Affairs Manager at Fighting Blindness said; “World Retina Day 2013 has this year coincided with the AGM of our organisation, and it is so encouraging that we are in the position to inform our members of the strides being taken in clinical trials and how they can potentially benefit. Fighting Blindness is putting a lot of energy into preparing for clinical trials through our Target 3000 initiative which is designed to coordinate and register all of the patients in Ireland who are affected by inherited retinal conditions, providing a complete molecular and clinical diagnosis and ensuring that people in Ireland will have every opportunity to participate in the relevant trials, when they come on stream. It is also crucial for us to partner with Retina International so that we are aligned with international best practice and staying informed about the progress of clinical trials as they develop internationally.

To learn more about Retina International visit: www.retina-international.org. To get involved in the Fighting Blindness Target 3000 project, please contact us on 01 709 3050 or email research@fightingblindness.ie.

 

More about retinal disorders

Inherited retinal disorders such as retinitis pigmentosa (RP), Usher syndrome, macular degeneration and allied dystrophies are conditions that affect people of all ages from infancy through to adulthood and although they are generally genetic they can also occur sporadically in patients with no family history of the disease. Retinitis pigmentosa (RP) is part of the family of inherited retinal diseases which cause the retina to degenerate over a period of time specific to each individual. The more time goes by without treatment the more sight is irreversibly lost.

Click here for more information retinal disorders.