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Disease-Illness
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# Web Link Hits
1   Link   AFTD (Association for Frontotemporal Dementias)
The Association for Frontotemporal Dementias (AFTD) is a nationwide non-profit organization whose mission is to promote and fund research into finding the cause and cure for the frontotemporal dementias; to provide information, education, and support to persons diagnosed with frontotemporal dementias (FTD) and their families and caregivers; and to educate physicians and allied health professionals about FTD. 		2585
2   Link   ALS Association
To lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.

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3   Link   All - Clinical Trials. gov
This website contains federally and privately funded clinical trials in the US and abroad. It hosts trials relating to virtually every type of disease or condition. 		1960
4   Link   Alzheimers Care Consultants
Nataly Rubinstein MSW,LCSW,C-ASWCM is a professionally licensed clinical social and certified geriatric care manager. Our expertise is dementia care: family mediation, Alzheimers coaching, crisis management, referrals and book - Alzheimers Disease & Other Dementias - The Caregiver's Complete Survival Guide. 		735
5   Link   Alzheimers Association
The Alzheimer's Association is the world leader in Alzheimer research and support. Through our national network of advocates and chapters, we advance research, improve services and care, create awareness of Alzheimer's disease and mobilize support. Our vision is a world without Alzheimer's disease. 		2137
6   Link   Arthritis Foundation
The Arthritis Foundation Web site is designed to help you get the answers you need when you need them.
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7   Link   Benign Essential Blepharospasm Research Foundation (BEBRF)
Blepharo means "eyelid". Spasm means "uncontrolled muscle contraction". The term blepharospasm ['blef-a-ro-spaz-m] can be applied to any abnormal blinking or eyelid tic or twitch resulting from any cause, ranging from dry eyes to Tourette's syndrome to tardive dyskinesia.
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8   Link   Bone Marrow Transplant - National Bone Marrow Transplant Link
This link leads to the Caregivers' Guide for Bone Marrow/Stem Cell Transplant:
Practical Perspectives, part of the webpages for the National Bone Marrow Transplant Link (nbmtLINK) 		61
9   Link   BrainandSpinalCord.org
Whenever a person or family is suddenly confronted with the world-changing experience of a catastrophic spinal cord injury or brain injury, there are a host of questions but seemingly few solid answers. These questions involve a wide spectrum of issues: health, rehabilitation, hope for recovery, current research, financial, legal, and the list goes on. BrainandSpinalCord.org was created as a knowledge-base for brain injury and spinal cord injury survivors to help answer these kinds of questions. 		2436
10   Link   Brain Injury Association
The Brain Injury Association of America (BIAA) is the leading national organization serving and representing individuals, families and professionals who are touched by a life-altering, often devastating, traumatic brain injury (TBI). 		2240
11   Link   Cancer - American Cancer Society
ACS is a nationwide, community-based, voluntary health organization that is committed to fighting cancer through balanced programs of research, education, patient service, advocacy, and rehabilitation. 		2101
12   Link   Cancer - Asbestos Cancer and Mesothelioma Support Center
The Asbestos Cancer and Mesothelioma Support Center is solely concentrated on the knowledge of, and the issues stemming from, exposure to asbestos. In attempt to educate about the seriousness of asbestos exposure and mesothelioma we are seeking substantial, relevant sites containing credible content and/or programs. 		2374
13   Link   Cancer - Cancercare
CancerCare is the oldest and largest non-profit agency dedicated to helping people face the many challenges of a cancer diagnosis. CancerCare provides free professional support services, including counseling, education, financial assistance and practical help, to people with cancer, their loved ones, and healthcare professionals across the country.

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14   Link   Cancer - Cancer.net
Award-winning American Society of Clinical Oncology portal for cancer patients.
Includes information for caregivers also. 		287
15   Link   Cancer - Cancervive
Cancervive is a non profit organization founded by childhood cancer survivor Susan Nessim. Cancervive provides support, education and advocacy for survivors,families and the community. 		2221
16   Link   Cancer - 4th Angel.com
4th Angel - Patient and Caregiver Mentoring Program

After recovering from his cancer, Scott Hamilton identified three angels who helped him through the ordeal. Scott’s oncology physician at The Cleveland Clinic was his first angel; his oncology nurse, his second angel; and his family and friends, his third.

What he felt was missing, however, was a fourth angel: someone who had gone through a similar experience and would understand what he was feeling; someone who had been there. His idea was to create a format in which cancer survivors or caregivers could talk to their peers about the cancer experience. Thus, the survivor-to-patient/caregiver mentoring programs were born.

With Scott as its driving force, 4th Angel is an innovative, interactive approach to cancer care in which newly diagnosed patients or caregivers are matched with trained volunteers.

While emphasizing one-on-one contact, people are matched with mentors of similar age and cancer experiences to best empower caregivers and patients with knowledge, awareness, hope … and a helping hand.
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17   Link   Cancer- Immerman's Angels
One on One Cancer Support: Connecting Cancer Fighters, Survivors and Caregivers. Extract from a letter from founder Jonny Imerman, "I wondered: "What if every cancer fighter could talk to a cancer survivor, who not only had beaten the same type of cancer, but who also was the same age and gender as the fighter? The cancer survivor would be an angel walking, living proof that the fighter could win too. What an amazing connection." Imerman Angels also matches caregivers of cancer fighters to other caregivers.
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18   Link   Cancer-Imtooyoungforthis.org
I'm Too Young For This.org is a place for young adults affected by cancer. There are an estimated 600,000 in the U.S., as well as their caregivers -- family or spousal. The site includes a link to the Stupid Cancer Show -- "the voice of young adults with cancer." 		2139
19   Link   Cancer-Mesothelioma and Asbestos Exposure
Asbestos News is a leading resource on asbestos exposure and mesothelioma. We strive to serve as the most up-to-date news and information resource to help educate and raise awareness about the when, where, and how asbestos was used, and the potential illnesses that are associated with asbestos exposure. 		964
20   Link   Cancer - National Cancer Institute
Questions about cancer?
1-800-4-CANCER
LiveHelp online chat




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21   Link   Cancer - National Cancer Institute in Espanol
¿Preguntas sobre el cáncer?
1-800-422-6237
(1-800-4-CANCER)

Llame de lunes a viernes de 9:00 a.m. a 4:30 p.m., hora local en Estados Unidos y sus territorios
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22   Link   Cancer - Patient Resource Cancer Guide
Provides materials for patients and families. Titles include:

Patient Resource Cancer Guide
Patient Resource Cancer Guide: Acute Promyelocytic Leukemia
Patient Resource Cancer Guide: Advanced Prostate Cancer
Patient Resource Breast Cancer Guide (2 titles)
Patient Resource Cancer Guide: Leukemia, Lymphoma, and Multiple Myeloma
Patient Resource Cancer Guide: Treatment-Related Side Effects





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23   Link   Cancer Support Community
Formerly the Wellness Community (TWC), merged with Gilda's Place. An international non-profit organization dedicated to providing support, education and hope for all people affected by cancer - at no cost. 		2322
24   Link   Cancer - Survivorship A-Z
Our Unique Mission: To provide the practical, financial and legal information you need to thrive in the "new normal" that exists after a life-changing diagnosis. Our information is modified when appropriate to specific conditions such as Cancer or HIV/AIDS, and can be tailored for your life and situation through an Individual Action Plan.
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25   Link   Care Crossroads - Alzheimers Foundation of America
Part of a range of programs offered by AFA to family caregivers of persons with Alzheimer's Disease.

updated 20110401 		797
26   Link   Caregiver of Intersex or Androgen Insensitivity Syndrome Support Group
Androgen Insensitivity Syndrome (AIS) is a condition that affects sexual development before birth and during puberty. People with this condition are genetically male. They may have female sex characteristics or signs of both male and female sexual development. Mission : Educate and spread awareness, end secrecy with truth. 		448
27   Link   COPD Foundation
(CHRONIC OBSTRUCTIVE PULMONARY DISEASE)
COPD, or Chronic Obstructive Pulmonary Disease, is an umbrella term used to describe progressive lung diseases including emphysema, chronic bronchitis, refractory (non-reversible) asthma, and some forms of bronchiectasis. This disease is characterized by increasing breathlessness. Web site includes a blog, news and notices of upcoming conferences and other events. 		75
28   Link   Crohn's and Colitis Foundation of America
The Crohn's and Colitis Foundation of America is a non-profit, volunteer-driven organization dedicated to finding the cure for Crohn's disease and ulcerative colitis. 		2438
29   Link   Dementia Guide
Welcome to DementiaGuide, your web-based companion for dealing with dementia. Here, you'll find helpful information about dementia and the convenient online service, SymptomGuideâ„¢, a practical tool for recording, tracking and measuring the effects of dementia.
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30   Link   Dementia-Palliative Dementia Care Resources
We are committed to promoting public and professional awareness around palliative care needs facing individuals with advanced dementia and their caregivers. We are dedicated to providing access to appropriate online resources for family and professional caregivers.

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31   Link   Depression and Bipolar Support Alliance
The Depression and Bipolar Support Alliance (DBSA) is the nation’s leading patient-directed organization focusing on the most prevalent mental illnesses depression and bipolar disorder.
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32   Link   Diabetes - American Diabetes Association
The American Diabetes Association is leading the fight against the deadly consequences of diabetes and fighting for those affected by diabetes. The Association funds research to prevent, cure and manage diabetes; delivers services to hundreds of communities; provides objective and credible information; and gives voice to those denied their rights because of diabetes. Founded in 1940, our mission is to prevent and cure diabetes and to improve the lives of all people affected by diabetes. For more information please call the American Diabetes Association at 1-800-DIABETES (1-800-342-2383) or visit www.diabetes.org. Information from both these sources is available in English and Spanish. Find out what is happening in your area. 		2027
33   Link   Endocrine - The Hormone Foundation
The Hormone Foundation is dedicated to providing information about endocrine system diseases including diabetes, thyroid problems, and osteoporosis.
www.hormone.org/ 		2208
34   Link   Epilepsy Foundation
The Epilepsy Foundation is the national voluntary agency solely dedicated to the welfare of the 2.7 million people with epilepsy in the U.S. and their families. 		2426
35   Link   Fall Prevention Coalition (Northern Virginia)
The Centers for Disease Control & Prevention (CDC) has developed an educational program including exercise routines, home modifications, medications review, and vision awareness. In the Virginia counties of Loudoun, Fairfax and Prince William, local businesses including professional pharmacists, optometrists, caregivers, and other specialists serving the aging community, have formed the Northern Virginia Fall Prevention Coalition,(NVFPC)to help independent living communities, faith based groups, and residents of each respective county to implement the CDC strategies. 		1459
36   Link   Fibromyaligia Foundation, The National
Our mission is to develop and execute programs dedicated to improving the quality of life of people affected with Fibromyalgia.
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37   Link   National Fragile X Foundation
Resources for Fragile X Syndrome and related conditions of Fragile X Tremor Ataxia Syndrome (FXTAS) and Fragile X Primary Ovarian Insufficiency (FXPOI). 		1746
38   Link   GBS/CIDP Foundation International
The GBS/CIDP Foundation International is the only voluntary, nonprofit organization that provides support to patients of Guillane-Barre Syndrome or Chronic Inflammatory Demyelinating Polyneuropathy and their families, awards grants to researchers and offers education to the public and professional communities. 		2341
39   Link   Heart - American Heart Association
Our mission is to reduce disability and death from cardiovascular diseases and stroke. 		2093
40   Link   Hemophilia Foundation, The National
The National Hemophilia Foundation is dedicated to finding better treatments and cures for bleeding and clotting disorders and to preventing the complications of these disorders through education, advocacy and research. 		2044
41   Link   Huntington's Disease - The Hereditary Disease Foundation
The Hereditary Disease Foundation focuses on Huntington's disease, a fatal, autosomal-dominant neurological illness causing involuntary movements, severe emotional disturbance and cognitive decline. 		2166
42   Link   Immune - American Autoimmune Related Diseases Assoc
The American Autoimmune Related Diseases Association is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, research, and patient services in an effective, ethical and efficient manner. 		2270
43   Link   Immune - (CFIDS) Chronic Fatigue & Immune Dysfunction Syndrome Assoc of America
Chronic fatigue and immune dysfunction syndrome (CFIDS), also known as chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME) and by other names, is a complex and debilitating chronic illness that affects the brain and multiple body systems. On this portion of our website you can find detailed information about CFIDS, its symptoms, diagnosis, treatment, important research findings and how it affects the lives of those who live with it everyday.

Whether you are a person with CFIDS, a medical professional, a caregiver or just curious, we hope that the information you find here will improve your understanding of this devastating illness that affects more Americans than multiple sclerosis (MS), AIDS or lung cancer.

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44   Link   Immune Deficiency Foundation
Primary immune deficiency diseases are disorders in which part of the body's immune system is missing or does not function properly. 		2335
45   Link   Kidney Foundation, The National
The National Kidney Foundation, Inc., a major voluntary health organization, seeks to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation. 		2282
46   Link   Leukemia and Lymphoma Society (LLS)
The mission of The Leukemia & Lymphoma Society (LLS) is: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.

LLS is the world's largest voluntary health agency dedicated to blood cancer. LLS funds lifesaving blood cancer research around the world and provides free information and support services. 		259
47   Link   Lupus Foundation of America
With nearly 300 chapters, branches and support groups in 32 states, the Lupus Foundation of America (LFA) is the nation's leading non-profit voluntary health organization dedicated to finding the causes and cure for lupus. 		1994
48   Link   Mental Illness - (NAMI) National Alliance for the Mentally Ill
NAMI is the National Alliance on Mental Illness, the nation’s largest grassroots mental health organization dedicated to improving the lives of individuals and families affected by mental illness. Founded in 1979, NAMI has affiliates in every state and in more than 1,100 local communities across the country.

Great support for caregivers and families affected by the mental illness of their loved ones. Family-to-Family course details are here: http://www.nami.org/Template.cfm?Section=Family-to-Family&lstid=605 		2142
49   Link   Movement Disorders- Life In Motion
Movement disorders are chronic, often painful, and debilitating neurological conditions that affect the ability to control movement. Having a movement disorder can make it difficult even impossible to do the routine things in life that most people take for granted.

Movement disorders are common. More than 40 million Americans nearly one in seven people are affected. Yet many movement disorders are not well known and symptoms may not be recognized by all medical professionals.

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50   Link   Movement Disorders - WE MOVE
The Internet's most comprehensive resource for movement disorder information and the hub of movement disorder activities on the web. 		2300
51   Link   Multiple Sclerosis and Caregivers
Multiple Sclerosis and Caregivers is an interactive DVD that takes a look at
the challenges of surviving in a relationship that includes giving care. In
this program, you will meet 4 couples who wrestle with the daily challenges of caring for a partner while still caring for themselves.

This program is the third in Direct Health Media¹s Multiple Sclerosis Series. DHM is a communications nonprofit dedicated to educating patients, their families, and their caregivers with disease-specific information and related topics. All of DHM¹s programs are distributed free-of-charge.
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52   Link   Multiple Sclerosis Association of America
MSAA's mission is to enrich the quality of life for everyone affected by multiple sclerosis. Our wide array of programs and services bring ongoing support and direct services to people with MS and their families throughout the country. MSAA also serves to promote greater understanding of multiple sclerosis and the diverse needs and challenges of people with MS. 		2319
53   Link   Multiple Sclerosis Society, The National
The mission of the National Multiple Sclerosis Society is to end the devastating effects of MS. Founded in 1946, the National Multiple Sclerosis Society supports more MS research, offers more services for people with MS, provides more professional education programs, and furthers more MS advocacy efforts than any other MS organization in the world.
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54   Link   Muscular Dystrophy Association
The Muscular Dystrophy Association offers caregiver support groups for family,
friends and caregivers of those affected by neuromuscular diseases. Offices and services -- including support groups -- are nationwide.
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55   Link   Myasthenia Gravis Foundation of America
The Myasthenia Gravis Foundation of America (MGFA) is the only national volunteer health agency dedicated solely to the fight against myasthenia gravis. 		2121
56   Link   Pain - American Pain Foundation
The American Pain Foundation is an organization serving people with pain through information, advocacy, and support. Our mission is to improve the quality of life of people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management. 		2236
57   Link   Paralysis - Christopher and Dana Reeve Foundation
The Christopher and Dana Reeve Foundation is dedicated to curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy.
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58   Link   Parkinson Foundation, The National
NPF is the largest and oldest national Parkinson foundation in the United States. NPF supports Parkinson-related research, patient care, education, training, and outreach. 		2267
59   Link   Parkinson Foundation - The Northwest
A nonprofit organization established to improve quality of life for the Northwest (U.S.) Parkinson's disease community through programs of awareness, education, advocacy and care.
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60   Link   Parkinsons -APDA National Young Onset Center
The American Parkinson Disease Association APDA National Young Onset Center focuses on developing education and support services that address the unique needs of young people with Parkinson's disease, their family members and friends as well as their healthcare team. 		592
61   Link   Pituitary - The Pituitary Network Association
The Pituitary Network Association (PNA) is an international non-profit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and health care providers who treat them.
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62   Link   Reflex Sympathetic Dystrophy Syndrome Association
The Reflex Sympathetic Dystrophy Syndrome Association was founded in 1984 to promote public and professional awareness of Reflex Sympathetic Dystrophy Syndrome (RSD or RSDS), also known as Complex Regional Pain Syndrome (CRPS I). 		2351
63   Link   Scleroderma Foundation, The
The Scleroderma Foundation is the national organization for people with scleroderma and their families and friends. 		2374
64   Link   Spinal Association, The United
Our mission is to provide expertise, create access to resources and strengthen hope thereby enabling people with spinal cord injuries and disorders (SCI/D) to
fulfill their potential as active members of their communities.
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65   Link   Spinal Cord-Arachnoiditis
Chronic intractable incapacitating pain and sensory, motor and autonomic nerve dysfunction.
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66   Link   Spinal Cord - National Spinal Cord Injury Association
Founded in 1948, the National Spinal Cord Injury Association is the nation's oldest and largest civilian organization dedicated to improving the quality of life for hundreds of thousands of Americans living with the results of spinal cord injury and disease (SCI/D) and their families. This number grows by thirty newly-injured people each day. 		2588
67   Link   Stroke - American Stroke Association
By the year 2010, the American Stroke Association will reduce stroke and risk of stroke by 25 percent through a variety of collaborative ventures and volunteer commitments at the local and national levels.

This impact goal will be accomplished by the American Stroke Association distinguishing itself as the leader in providing effective, credible information for professional, patient and general public audiences, with specific emphasis on those at greatest risk. This was established as the strategic driving force of the American Stroke Association by a national panel of experts who reviewed the latest epidemiological studies identifying the most effective intervention stages to impact stroke-related morbidity, mortality and disabilities.
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68   Link   Stroke - Research Center for Stroke & Heart Disease
The Research Center for Stroke & Heart Disease is a non-profit organization dedicated to preventing stroke and heart disease nationally. 		2063
69   Link   Tremor Action Network
TAN's mission is to spread awareness of essential tremor (ET) by advocating for a cure through research. Our one-on-one services provide support and guidance to patients, family members and caregivers through information, resources, and volunteer advocates. 		2330
70   Link   Vision - American Foundation for the Blind
Expanding possibilities for people with vision loss 		2061