NEW YORK—AMD Alliance International (AMDAI) has developed a Macular Disease Patient Charter, a road map for people living with the blinding disease to help patients receive the care they need, and to have an active, informed voice in their life journey with macular disease, according to an announcement from the organization.
The goal of the Charter is to mitigate many of the residual effects of retinal disease diagnoses which often include severe depression and anxiety on a level with diagnosis of cancer or even stroke. The Patient Charter consists of four principles, including:
1. Awareness, Prevention & 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.
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 & 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.
AMDAI, the only international organization in the world dedicated exclusively to promoting awareness, treatment and research into macular degeneration, is encouraging patients to seek regular doctors’ appointments and to adopt the principles of the Patient Charter. The full Macular Degeneration Patient Charter can be downloaded at http://www.amdalliance.org/documents/Patient_Charter.pdf.
AMDAI offers ECPs information on early detection, timely treatment, comprehensive rehabilitation and support services, as well as new prevention suggestions for AMD. For more information, go to the AMDAI Web site at