Additional Organizations and Resources
The following organizations can be tremendous resources for additional information and educational materials directed toward people at risk for AMD, patients, physicians, caregivers or others trying to understand the disease.
Alliance for Aging Research
202-293-2856
www.agingresearch.org
The private, nonprofit Alliance for Aging Research is the nation’s leading citizen advocacy organization for improving the health and independence of Americans as they age. The Alliance was founded in 1986 to promote medical and behavioral research into the aging process. Since then, and as the explosion of the Senior Boom approaches, the Alliance has become the voice for Baby Boomer health by developing, implementing and advocating programs in research and professional and consumer health education and public policy.
AMD Alliance International
416-486-2500
www.amdalliance.org
AMD Alliance International is a coalition of the world’s leading vision and seniors’ organizations including Prevent Blindness America, Foundation Fighting Blindness, Lighthouse International, the Seniors Coalition and the Lion’s Club. The Alliance works to raise awareness of Age-Related macular degeneration and understanding of available options for prevention, early detection, treatment, rehabilitation and support services. The Alliance currently represents 40 member organizations in 20 countries. AMD Alliance is the only international organization that concentrates exclusively on AMD.
American Academy of Ophthalmology
415-561-8500
www.aao.org
The American Academy of Ophthalmology is the largest national membership association of Eye M.D.s. Eye M.D.s are ophthalmologists, medical doctors or doctors of osteopathy who provide comprehensive eye care, including medical, surgical and optical care. More than 90 percent of practicing U.S. Eye M.D.s are Academy members, and the Academy has more than 7,000 international members.
American Foundation for the Blind
800-232-5463
www.afb.org
The American Foundation for the Blind – the organization to which Helen Keller devoted her life – is a national nonprofit whose mission is to ensure that the 10 million Americans who are blind or visually impaired enjoy the same rights and opportunities as other citizens. The American Foundation for the Blind promotes wide-ranging, systemic change by addressing the most critical issues facing the growing blind and visually impaired population-employment, independent living, literacy and technology.
American Health Assistance Foundation
800-437-2423
www.ahaf.org
The American Health Assistance Foundation has dedicated more than 30 years to funding research on Age-Related and degenerative diseases, including AMD. The Foundation Web site provides information and resources for patients, caregivers and loved ones. Available materials include a low vision resource list as well as a newsletter on AMD.
American Macular Degeneration Foundation
413-268-7660
www.macular.org
The American Macular Degeneration Foundation is committed to the prevention and cure of macular degeneration and offers hope and support to those afflicted and their families. The Foundation serves as a major voice in establishing the national research agenda for macular degeneration through promoting an alliance among the scientific community, government and victims of the disease and their families to ensure the prevention and cure of the disease.
American Society of Retina Specialists
530-566-9181
www.vitreoretinal.org
The American Society of Retina Specialists is the largest organization of Vitreoretinal Specialists in the world. Its charitable nonprofit public foundation, the Vitreous Society, is dedicated to the education of the public in retina and vitreous disorders, to the continuing medical education of the vitreoretinal specialists in the United States and throughout the world, and to the promotion of research for new or more effective treatments of retina and vitreous diseases.
EyeCare America
1-800-222-EYES (3937)
www.eyecareamerica.org
EyeCare America is a public service foundation of the American Academy of Ophthalmology. Its mission is to reduce avoidable blindness and severe visual impairment by raising awareness about eye disease and care, providing free eye health educational materials and facilitating access to medical eye care.
Foundation Fighting Blindness
888-394-3937
www.blindness.org
The urgent mission of The Foundation Fighting Blindness is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa, macular degeneration, Usher Syndrome and the entire spectrum of retinal degenerative diseases.
Lighthouse International
800-829-0500
www.lighthouse.org
www.visionconnection.org
Lighthouse International’s mission is to overcome vision impairment for people of all ages through worldwide leadership in rehabilitation services, education, research, prevention and advocacy. Lighthouse seeks to enable people of all ages who are blind or partially sighted to lead independent and productive lives. Their one-stop, accessible and interactive global Internet portal called VisionConnection is for people who are partially sighted or blind, the professionals who serve them, the families and friends who support them and anyone looking for the latest information on vision impairment, its prevention and vision rehabilitation. VisionConnection is dedicated to providing expertise and support, as well as to making connections-to people, services and resources around the world.
The Macula Foundation
212-605-3777
www.macula.org/foundation
The Macula Foundation, Inc., a nonprofit organization, was established in 1978 to support basic and clinical research in vitreous, retinal and macular diseases, a major cause of blindness for all age groups. Since it was formed, the Foundation has distributed grants and awards of approximately $15 million earmarked for important clinical and scientific research and related teaching programs.
The Macula Society
216-839-4949
www.maculasociety.org
The Macula Society was founded in 1977 when Dr. Lawrence J. Singerman recognized the need for a forum to present and critique the rapidly expanding new research in retinal vascular and macular disease. Still, after 25 years, the purpose of the Society is to provide a forum for the presentation and dissemination of the most current and most advanced scientific information and research available in retinal vascular and macular diseases.
Macular Degeneration Foundation
888-633-3937
www.eyesight.org
The Macular Degeneration Foundation provides the opportunity to communicate with physicians and scientists focused on specific research of AMD and AMD treatments. In addition to the support of long term efforts in the fields of stem cell and genetic research for an ultimate cure, the Foundation’s goal is to provide near-term scientific studies designed to inhibit the progression of macular degeneration and restore a measurable amount of vision.
Macular Degeneration Partnership
888-430-9898
www.amd.org
The Macular Degeneration Partnership is a nonprofit organization whose mission is to provide comprehensive, easily understood and up-to-the-minute information about macular degeneration to the public through the Internet, telephone, public events and printed materials, to support research and to coordinate advocacy efforts.
Macular Degeneration Support
816-761-7080
www.mdsupport.org
Macular Degeneration Support, Inc. is a nonprofit, worldwide public service organization founded in 1995 to offer assistance to people who are affected by macular degeneration and related retinal diseases as well as answers to questions about research, treatment and helpful strategies for improving function and maintaining independence. Known more simply as MD Support, it is based on the Internet and also provides a unique non- Internet public awareness program in the form of print outs of the entire MD Support site.
National Eye Institute
301-496-5248
www.nei.nih.gov
The National Eye Institute (NEI) was established by Congress in 1968 to protect and prolong the vision of the American people. As one of the Federal government’s National Institutes of Health (NIH), the NEI conducts and supports research that helps prevent and treat eye diseases and other disorders of vision. This research leads to sight-saving treatments, reduces visual impairment and blindness and improves the quality of life for people of all ages. NEI-supported research has advanced our knowledge of how the visual system functions in health and disease.
The National Eye Institute and ClinicalTrials.gov are also excellent resources for learning about the exciting and promising research currently being conducted at various stages of AMD. These sites can provide information on where clinical trials are being conducted and who can participate as well as tracking the results of completed studies.
www.nei.nih.gov/neitrials
www.clinicaltrials.gov
Prevent Blindness America
800-331-2020
www.preventblindness.org
Prevent Blindness America is the nation’s leading volunteer eye health and safety organization dedicated to fighting blindness and saving sight. Focused on promoting a continuum of vision care, Prevent Blindness America touches the lives of millions of people each year through public and professional education, advocacy, certified vision screening training, community and patient service programs and research.
