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Patient Charter – You have rights!

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Wet AMD can rapidly damage the macula and result in a very quick loss of central vision.

Patient Charter

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.

Macular Disease Patient Charter

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.

1. AWARENESS, PREVENTION AND CURE:

People have the right to expect that:

research into causes and cures is supported by public funding;
public awareness programs are developed to ensure that awareness of MD as a disease with risk factors is enhanced and action can be taken to reduce risk and future incidence of MD.

2. DIAGNOSIS:

People have the right to:

a timely and accurate diagnosis from qualified and accredited personnel.
be treated with dignity and respect, which includes receiving timely, supportive and respectful answers to questions.
receive, at the time of diagnosis, full and complete information about MD, about potential changes in the life journey ahead, and about how to access non-medical resources such as vision rehabilitation and counseling.
bring caregivers and family into doctor‚Äôs appointments if they so wish.

3. TREATMENT:

Persons with macular diseases have the right to:

timely care with best possible approved or authenticated treatments.
make an informed consent to treatment, which means they must be provided with information to ensure understanding about all approved treatment or disease management options, potential benefits, risks and side-effects.

4.CARE AND SUPPORT:

People have the right to:

an optimum standard of care, which includes receiving information about:
options for disease management, including follow up eye exams and on-going care.
risk management strategies.
low vision services and vision rehabilitation, including referral to self-help and professional services such as counseling or other psycho-social services.

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.

Pope Benedict XVI receives the Macular Disease Patient Charter

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!

Disclaimer

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.