PRO RETINA Deutschland e.V.

PRO RETINA Deutschland e.V.

Our Mission

We want to encourage everyone who may face sight deterioration or blindness due to retina impairment to lead a self-determined life through prevention, therapy and to overcome problems jointly.

 

Strong Together

PRO RETINA Deutschland e.V. is a national self-help organization for people with genetic retina diseases.

It was established in 1977 as the German Retinitis Pigmentosa Association by those affected and their families with the aim of helping themselves.

Today PRO RETINA has about 6,000 members throughout Germany. Each member can join one of the approximately 50 regional groups. The Managing Board and all active members are volunteers.

  • PRO RETINA offers support for
  • Retinitis Pigmentosa (RP)
  • Macula Degeneration (MD)
  • Age-related Macula Degeneration (AMD)
  • Usher Syndrome
  • and many other rare diseases of the retina.

PRO RETINA advises those effected and their relatives on medical and social issues and which aids to choose. It promotes research and represents patients' interests in research and medicine.

There is a scientific and medical council for this work.

What We Do

Research

Via its Foundation PRO RETINA contributes to research into effective therapies.

In 2010 the PRO RETINA Foundation for the Prevention of Blindness established a foundation chair focussing on retina research at the University in Regensburg.

A clinical research chair has existed at the University in Bonn since 2012.

PRO RETINA is the only patient self-help group to be a partner in the EU "EYERISK" Project in the EU 2020 Programme to determine the risk factors for age-related macula degeneration (AMD).

To date we have built up an independent patient register for the whole of Germany to optimize patient and researcher participation in clinical studies of retina diseases.

 - We arrange contact between those affected, doctors and scientists

 - We organize symposia for patients with university eye clinics among others

 - We support national and international seminars and conferences.

Self-Help

Our groups meet regularly to exchange information about social, professional and private problems.  Our advisors* give support for individual problem areas or name contacts.

PRO RETINA offers patient consultations at several clinics. Those affected themselves inform and advise patients.

There are surgeries in Ahaus, Bonn, Düsseldorf, Cologne, Münster and Tübingen.

Publicity

We offer topical information in various media, e.g. as printed brochures or acoustic and electronic media about syndromes and therapies. Co-authors are often well-known scientists.

Our programme is rounded off by the free specialist magazine "Retina Aktuell" and a newsletter about research topics.

We advocate improved mobility through high-contrast design in public places and barrier-free access to information. Here we work with committees of experts and political bodies.

Become a Member

Everyone who suffers from a degenerative retina disease can become a member of PRO RETINA, as well as their relatives, friends and supporters.

PRO RETINA Deutschland e.V.

Self-Help Association of people with retina degeneration

Promote research - manage the illness - live a self-determined life

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