The Macular Disease Patient Charter, a bill of rights for people with macular disease, has been developed by AMD Alliance International. Unanimously endorsed by members at their Annual Congress in May 2008, the charter is a tool designed to outline the rights of people living with macular disease. The Patient Charter encourages patients to seek the high quality of care they deserve through a better understanding of their individual rights.
Each day world-wide, thousands of people are newly diagnosed with macular disease and the numbers are ever increasing in a dramatic way. This must be considered in health sector policy development and in public health programs.
People living with macular disease (MD) have, to the maximum extent they wish, the right to self-determination and an active, informed voice in their life journey with macular disease. The MD Patient Charter is a road map for that patient life journey‚ written by patients, for patients. There are four essential cornerstones in this Charter: prevention and cure; timely diagnosis; universal access to proven treatment; and holistic care and support.
People have the right to expect that:
People have the right to:
Persons with macular diseases have the right to:
People have the right to:
All people are entitled to the rights outlined in this Charter regardless of age, gender, marital status, ethnicity, religion, sexual orientation, education or financial status.
Imagine the opportunity to make His Holiness, Pope Benedict XVI personally aware of the needs of people with macular disease! Such was the case in Rome last week when tandem cyclists ended their awareness raising tour at the Vatican – presenting the Macular Disease Patient Charter and receiving a special blessing. We are very pleased to share some pictures of that historic presentation.
As AMDAI members know, The Macular Disease Patient Charter is a bill of rights providing an essential road map for those living with macular disease. Work to promote the Charter continues with vigor and you play a vital role. Our vision is a world free from the devastating impacts of macular disease, and, until that is achieved, we will fight tirelessly to achieve hope through awareness, research, treatment and support for those who are impacted.
Call us immediately if to order your free copy of the charter (including alternate formats), other languages, or if you have great ideas to further the cause!
In addition to thanking the founding Charter members – Retina France, IAPB Italia, Retina Italia Onlus, Macular Disease Society (UK) and Pro-Retina Deutschland – for their foresight in advancing the Charter, thanks also go out to everyone who made the Tandem Tour possible, notably but not limited to our key liaison Horst Schwager, Werner Lechtenfeld and Christina Fasser. Thanks also to AMDAI’s Chairman David Herman and our international patient spokesperson MacDonald (Don) Curran who have been absolutely tremendous champions of the Charter.
Above all, thanks to each of YOU who have joined the international fight for the rights of people with macular disease. Without your support and encouragement, none of this would be possible, so we send our warmest thanks for your essential support. Please keep in touch!
AMD Alliance International is not a medical organisation, therefore we can only provide general information that is not intended to be a substitute for a proper medical assessment. Please read our eye health information disclaimer.