Caregiver Resource Links - Chronic Conditions

There are 149 resource links in this category.
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1. Accelerated Cure Project for Multiple Sclerosis
   
   
2. Acoustic Neuroma Association
   They provide information and support to persons diagnosed with or treated for acoustic neuroma and other benign tumors of the cranial nerves. They publish a quarterly newsletter and distribute patient information booklets, have local support groups and a website for patient information and discussion.
   
3. ALS Association
   ALSA provides help and hope to those facing the disease. The mission is to find a cure for and improve living with amyotrophic lateral sclerosis.
   
4. American Chronic Pain Association
   ACPA has worked to provide education to help people better manage their pain and live more satisfying, productive lives. They offer information about pain management, resources to help you be better informed, and first-person stories from people like you who have learned to live well in spite of their pain.
   
5. American Diabetes Association
   This association funds research to prevent, cure and manage diabetes, provides objective and credible information, and helps those denied their rights because of diabetes.
   
6. American Foundation for the Blind's Senior Site
   The information on this site will be useful to you, if you or someone you care about has recently been diagnosed with vision loss, such as macular degeneration or glaucoma. Their goal is to change your life and provide you with helpful solutions about access, rehabilitation, education, assistive technology, employment, low-vision services, and other issues relating to blindness.
   
7. American Kidney Fund
   The American Kidney Fund fights kidney disease through direct financial support to patients in need, health education, and prevention efforts.
   
8. American Liver Foundation
   The liver processes what you eat and drink into energy and nutrients your body can use and removes harmful substances from the blood. Visit the The American Liver Foundation website to learn about liver health and diseases.
   
9. American Lyme Disease Foundation
   They provide accurate information to the public, medical community and government agencies about tick-borne diseases and their effects on human health and quality of life.
   
10. American Pain Foundation
    This website provides help 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 to increase access to effective pain management.
    
11. American Pain Society
    
    
12. Aplastic Anemia & MDS International Foundation, Inc.
    The Aplastic Anemia & MDS International Foundation is the oldest and largest patient advocate and support organization for bone marrow diseases. Their services are free.
    
13. ARCH National Respite Network
    The ARCH program was begun in the early 1990s with funding from the Children's Bureau in the US Department of Health and Human Services to support a national network of federally funded respite and crisis care programs for children with disabilities, chronic illness and at risk of abuse and neglect. During its tenure as a national resource center, ARCH staff developed an array of resources for families and respite providers, including the national respite locator service, guides for starting respite programs in communities, and fact sheets on a variety of topics related to respite and crisis care not only for children and their families but also for families who are caring for the elderly.
    
14. Association for Professionals in Infection Control and Epidemiology, Inc.
    APIC emphasizes prevention and promotes zero tolerance for healthcare-associated infections and other adverse events. By 2012, APIC intends to be recognized as the leader in infection prevention and control by practitioners, policy makers, healthcare executives, and consumers.
    
15. Asthma and Allergy Foundation of America
    AAFA provides information, community based services and support to people through a network of Regional Chapters,Educational Support Groups and local partners. They develop health education, organize state and national advocacy efforts and fund research to find better treatments and cures.
    
16. Blood Vessel Disorders Part 1-UMMC You Tube Video
    Blood Vessel Disorders Part 1-In this interview, Dr. Ziv Haskal, who is chief of vascular and interventional radiology at the University of Maryland Medical Center, discusses deep vein thrombosis (DVT), pulmonary embolism, and related topics.
    
17. Blood Vessel Disorders Part 2-UMMC You Tube Video
    Blood Vessel Disorders Part 2-In this interview, Dr. Ziv Haskal, who is chief of vascular and interventional radiology at the University of Maryland Medical Center, discusses peripheral arterial disease (PAD), PAD symptoms, treatments and prevention.
    
18. BMT Infonet
    Blood & Marrow Transplant Information Network provides transplant patients easy-to-understand information about bone marrow, peripheral blood stem cell, and cord blood transplants. Their goal is to empower patients with credible information and emotional support, so that they can take a more active role in decisions affecting their health and treatment options.
    
19. Brain Aneurysm Foundation
    
    
20. Brain Injury Association of America
    The BIAA provides information, education and support to assist the 3.17 million Americans currently living with traumatic brain injury and their families.
    
21. Brainline
    
    
22. Burn Institute
    
    
23. Care Cure Community
    The art and science of managing therapies, routines, medication, supplies, equipment and everything else needed to maintain the spinal injured person in top health. This site has a variety of help forums.
    
24. Carepages (The)
    Free patient blogs that connect friends and family during a health challenge
    
25. Carter Centers for Brain Research in Holoprosencephaly and Related Malformations
    
    
26. Celiac Disease Foundation
    
    
27. Celiac Sprue Association
    
    
28. Center for the Study of Traumatic Stress
    
    
29. Chapel Hill Training
    Their mission is to develop, demonstrate and deliver programs and strategies that will enhance the lives of children, youth and families. Of principal concern to project staff are families in poverty, families caring for the elderly, children with disabilities or chronic illness, and children at risk of abuse and neglect.
    
30. Children and Adults with Attention Deficit/Hyperactivity Disorder CHADD
    CHADD provides education, advocacy and support for individuals with AD/HD, an informative Web site, and publishes a variety of printed materials for members and professionals on research advances, medications and treatments affecting individuals with AD/HD.
    
31. Children of Aging Parents
    This organization assists caregivers of the elderly or chronically ill with reliable info, referrals and support, and heightens public awareness that the health of the family caregivers is essential to ensure quality care of the growing elderly population. They have an online support group.
    
32. Christopher and Dana Reeve Foundation-Paralysis Resource Center
    PRC offers resources on spinal cord injury, paralysis and mobility related disabilities. The PRC is a program created by the Christopher and Dana Reeve Foundation (CDRF) to provide a comprehensive, national source of information for people living with paralysis and their caregivers to promote health, foster involvement in the community and improve quality of life
    
33. Chromosome Disorder Outreach
    
    
34. Chronic Fatigue Syndrome
    
    
35. Chronic Illness-WebMD
    A chronic illness may never go away and can disrupt your life in many ways. Learn how to cope by reading these articles on WebMD.
    
36. Chronic Pelvic Pain Part 1-UMMC You Tube Video
    In this interview, Dr. Vadim Morozov, a gynecologist at the University of Maryland Medical Center who specializes in minimally invasive procedures, discusses endometriosis, laparoscopic surgery, hysterectomy and ovarian cysts.
    
37. Chronic Pelvic Pain Part 2-UMMC You Tube Video
    In this interview, Dr. Vadim Morozov, a gynecologist at the University of Maryland Medical Center who specializes in minimally invasive procedures, discusses minimally invasive robotic surgery, fibroids and uterine fibroid embolization.
    
38. Coalition for Pulmonary Fibrosis
    The CPF funds research into new approaches to treat and cure pulmonary fibrosis; provides patients and families with comprehensive education materials; and works to improve awareness of Pulmonary Fibrosis in the medical community as well as the General Health and Other Helpful Websites public.
    
39. Creutzfeldt-Jakob Disease Foundation, Inc.
    Informational resource to Creutzfeldt-Jakob Disease, a rare, fatal brain disorder.
    
40. Crohn's & Colitis Foundation of America
    
    
41. CureSearch (Children's Oncology Group, National Childhood Cancer Foundation)
    
    
42. Cystic Fibrosis Foundation
    The mission of the Cystic Fibrosis Foundation, a nonprofit donor-supported organization, is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.
    
43. Depression and Anxiety Disorders Part 1-UMMC You Tube Video
    In this interview, Dr. Hinda Dubin, psychiatrist, who is psychiatrist at the University of Maryland Medical Center and a clinical assistant professor of psychiatry at the University of Maryland School of Medicine. discusses depression and anxiety disorders, such as panic attacks, phobias and obsessive-compulsive disorder.
    
44. Depression and Anxiety Disorders Part 2-UMMC You Tube Video
    In this interview, Dr. Hinda Dubin, psychiatrist, who is psychiatrist at the University of Maryland Medical Center and a clinical assistant professor of psychiatry at the University of Maryland School of Medicine. discusses depression and anxiety disorders, such as panic attacks, phobias and obsessive-compulsive disorder.
    
45. Easy2Swallow
    Easy 2 Swallow LLC is dedicated to making quality vitamins and supplements in preparations that are easy to take. Most of the pills out there are just too big for some people to take. They’ve created a line of vitamins and supplements designed to go down easier. In many cases they’re smaller and specially coated. In some cases they’re chewable. In all cases they’re easier to swallow. Only the highest quality formulations are used in all of their products.
    
46. Epilepsy Foundation
    Ensure that people with seizures are able to participate in all life experiences
    
47. FacioScapuloHumeral Muscular Dystrophy Society
    FSHD is a grassroots network of facioscapulohumeral muscular dystrophy patients, their families and research activists.
    
48. Families of Spinal Muscular Atrophy
    
    
49. Food Allergy and Anaphylaxis Network
    Their membership includes families, dietitians, nurses, physicians, school staff, government agencies and the food and drug industries. They raise public awareness, provide advocacy, education, and advance research on behalf of those affected by food allergies and anaphylaxis.
    
50. Foundation for Ichthyosis & Related Skin Types
    Ichthyosis affects more than one million Americans. The ichthyoses are a family of genetic skin diseases characterized by dry, thickened, scaling skin.
    
51. Foundation for Sarcoidosis Research
    Sarcoidosis is a potentially fatal inflammatory disease that can appear in almost any organ in the body. The lungs are affected in more than 90% of patients, but the disease often attacks the heart, eyes, central nervous system, liver and kidneys.
    
52. Gallaudet University, Laurent Clerc National Deaf Education Center
    
    
53. Generation S: Young Stroke Survivors
    Generation S raises stroke awareness in young people and advocates for a better, faster response from the medical community.
    
54. Gluten Intolerance Group
    The mission of the GIG is to provide support to persons with gluten intolerances, including celiac disease, dermatitis herpetiformis, and other gluten sensitivities, in order to live healthy lives.
    
55. Heart Disease in Women Part 1-UMMC You Tube Video
    In this interview, Dr. Myung Park, a cardiologist at the University of Maryland Medical Center, discusses types of heart disease, classic symptoms and women's symptoms, blockages, heart disease prevention, cholesterol and blood pressure.
    
56. Heart Disease in Women Part 2-UMMC You Tube Video
    In this interview, Dr. Myung Park, a cardiologist at the University of Maryland Medical Center, discusses pulmonary hypertension, and associated illnesses, symptoms and treatments.
    
57. Heart Disease Prevention Part 1-UMMC You Tube Video
    In this interview, Dr. Michael Miller, a cardiologist at the University of Maryland Medical Center who is head of the Center for Preventive Cardiology, discusses heart functions, blockages, cholesterol, and statin drugs.
    
58. Heart Disease Prevention Part 2-UMMC You Tube Video
    In this interview, Dr. Michael Miller, a cardiologist at the University of Maryland Medical Center who is head of the Center for Preventive Cardiology,discusses heart disease prevention, aspirin and ACE inhibitors, beta blockers, diet and exercise, omega 3, glucose control and high blood pressure.
    
59. Hepatitis B Foundation
    
    
60. Hepatitis Foundation International
    
    
61. Hormone Foundation
    HF is a leading source of hormone-related health information for the public, physicians, allied health professionals and the media. Their mission is to serve as a resource for the public by promoting the prevention, treatment and cure of hormone-related conditions through outreach and educaton.
    
62. HSC Foundation
    The HSC Foundation is dedicated to improving access to services for individuals who face social and health care barriers due to disability, chronic illness, or other circumstances that present unique needs.
    
63. Huntington's Disease Society of America
    Huntington's Disease is a devastating, hereditary, degenerative brain disorder for which there is, at present, no effective treatment or cure. HD slowly diminishes the affected individual's ability to walk, think, talk and reason. Eventually, the person with HD becomes totally dependent upon others for his or her care. Huntington's Disease profoundly affects the lives of entire families -- emotionally, socially and economically.
    
64. Hydrocephalus Association
    
    
65. Hydrocephalus Foundation, Inc.
    
    
66. IBS Impact
    IBS Impact is a grassroots effort by people with Irritable Bowel Syndrome who are committed to public awareness and self-advocacy by people with IBS. Many people with irritable bowel syndrome experience varying degrees of fecal incontinence.
    
67. Immune Deficiency Foundation
    
    
68. International League about Epilepsy
    
    
69. International Painful Bladder Foundation
    They promote awareness of interstitial cystitis (also known as painful bladder syndrome, bladder pain syndrome and hypersensitive bladder syndrome). The IPBF promotes the interests of IC patients.
    
70. Internet Stroke Center
    An independent web resource for information about stroke care and research
    
71. Invisible Disabilities Advocate
    The Invisible Disabilities Advocate strives to help friends and family better understand chronic illness and pain, as well as learn how to be a source of encouragement and support.
    
72. Irritable Bowel Syndrome Self Help and Support Group
    
    
73. John Hopkins Diabetes Health Alert
    Up-to-date information on the causes, symptoms, and advances in treatments for type 1 and type 2 diabetes
    
74. John Hopkins Lung Health Alert
    Timely research and information to help you cope with lung disease – asthma, lung cancer, sleep apnea, COPD, and others.
    
75. John Hopkins Stroke/Hypertension Health Alert
    Latest findings and recommendations for preventing and treating high blood pressure, stroke, and the other complications of high blood pressure with lifestyle modifications and medication
    
76. Juvenile Diabetes Research Foundation
    JDRF is a leader in setting the agenda for diabetes research worldwide, and is the largest charitable funder and advocate of type 1 research. They seek a cure for diabetes and its complications through the support of research.
    
77. Let's Talk About Bowel Control
    The Bowel Control Awareness Campaign and its web resources raises awareness of fecal incontinence.
    
78. Lupus Foundation of America
    Dedicated to finding the causes of and cure for lupus and providing support, services and hope to all people affected by lupus.
    
79. Malignant Hyperthermia Association of the United States
    
    
80. Managing Your Diabetes- Eli Lilly & Company
    Eli Lilly and Company developed this website to help you understand the basics of diabetes, how to manage your diabetes or care for someone with diabetes, to take steps toward living a healthy lifestyle and to learn the best ways to care for your diabetes.
    
81. Medical Cost Advocate
    Helps caregivers and their loved ones reduce their medical costs by validating billing accuracy and negotiating medical bills.  They can negotiate a better price before you have a procedure or reduce your medical bills after services are performed.  They will negotiate your bills regardless of the insurance plan you have -- POS, PPO, high deductible, HSA, HMO, etc.      
    
82. Mesothelioma Applied Research Foundation
    
    
83. Multiple Myeloma Research Foundation
    
    
84. Multiple Sclerosis Association
    MSAA promotes a greater understanding of multiple sclerosis and the diverse needs and challenges of people with MS.
    
85. Multiple Sclerosis Foundation
    They provide a comprehensive approach to helping people with MS maintain both their health and well-being by offering programming and support to keep them self-sufficient and their homes safe. They, also, offer educational programs to heighten public awareness and promote understanding about the illness.
    
86. Multiple Sclerosis International Federation
    
    
87. Multiple Sclerosis Update Part 1-UMMC You Tube Video
    In this interview, Dr. Walter Royal, director of the Maryland Center for MS at the University of Maryland Medical Center, discusses MS symptoms, diagnosis,types and medicines.
    
88. Multiple Sclerosis Update Part 2-UMMC You Tube Video
    In this interview, Dr. Walter Royal, director of the Maryland Center for MS at the University of Maryland Medical Center, discusses the role of physical therapy, stem cells and MS research.
    
89. Muscular Dystrophy Association
    The Muscular Dystrophy Association is a voluntary health agency -- a dedicated partnership between scientists and concerned citizens aimed at conquering neuromuscular diseases that affect more than a million Americans.
    
90. Myasthenia Gravis Foundation of America, Inc.
    MGFA is committed to finding a cure for myasthenia gravis and closely related disorders, improving treatment options and providing information and support to people with myasthenia gravis through research, education, community programs, and advocacy.
    
91. National Aphasia Association
    
    
92. National Eczema Association for Science and Education
    
    
93. National Emphysema Foundation
    
    
94. National Fibromyalgia Association
    When the National Fibromyalgia Association (NFA) started 14 years ago, our purpose was to bring awareness and legitimacy to fibromyalgia (FM). Over the years, the needs of the community grew and so did our concern for people affected by FM and those in the medical and research communities dedicated to helping us. We wanted to share with the media what it was like to live with FM so that others would become concerned and could help us to make sure things were moving forward so that people with FM would have better support, more effective treatments and a better quality of life. The ultimate goal has been and continues to be that through research and education we would learn the causes and how to treat, prevent and/or cure it.
    
95. National Foundation for Infectious Diseases
    
    
96. National Foundation for the Treatment of Pain
    This is a not-for-profit organization dedicated to providing support for patients who are suffering from intractable pain, their families, friends and the physicians who treat them. They provide a forum, act as your representative, intervene for individuals in need of pain treatment and refer them to treating pain specialists throughout the country and provide many more services.
    
97. National Headache Foundation
    
    
98. National Health Council
    They represent all segments of the health care community to improve the health of all people, particularly those with chronic diseases and/or disabilities.
    
99. National Institute of Allergy and Infectious Diseases
    
    
100. National Institute of Neurological Disorders and Stroke
     The mission of NINDS is to reduce the burden of neurological disease - a burden borne by every age group, by every segment of society. This is a federal agency that focuses primarily on conducting and funding research into neurological conditions, including Parkinson's.
     
101. National Kidney Disease Education Program
     
     
102. National Kidney Foundation
     
     
103. National Lung Health Education Program
     The National Lung Health Education Program (NLHEP), founded in 1997, is a national health care initiative to promote early diagnosis of chronic obstructive pulmonary disease and related disorders. NLHEP creates and provides lung health publications for laypeople and health professionals and develops and conducts workshops for health care professionals, to promote clinician expertise in office spirometry and spirogram interpretation, and to increase everyone's awareness of the effects of smoking and the availability of smoking-cessation programs, support systems, and treatments. The American Association for Respiratory Care (AARC) has been a NLHEP partner from the beginning, and now those 2 organizations are adding another dimension to their partnership: AARC is going to take over all NLHEP administrative functions.
     
104. National Lymphedema Network
     
     
105. National Marfan Foundation
     
     
106. National Marrow Donor Program
     
     
107. National Multiple Sclerosis Society
     Provides information on living with MS, current research and ways to get involved in helping to find a cure
     
108. National Organ and Tissue Donation Initiative
     
     
109. National Pancreas Foundation
     
     
110. National Psoriasis Foundation
     
     
111. National Rosacea Society
     
     
112. National Spinal Cord Injury Association (The)
     They provide education and empowerment to survivors of spinal cord injury and disease to achieve and maintain the highest levels of independence, health and personal fulfillment.
     
113. National Stroke Association
     Learn the symptoms, risk factors, prevention and recovery on this website
     
114. National Urea Cycle Disorders Foundation
     
     
115. Neuropathy Association
     
     
116. North American Spine Society
     
     
117. Osteogenesis Imperfecta Foundation
     
     
118. Pain Consortium
     
     
119. Pancreatica.org
     A database of the largest compilation of clinical trials against pancreatic cancer in the world-Pancreatica is available for patient or physician study and review and receives no remuneration if patients join any of the trials.
     
120. Paralyzed Veterans of America
     They have developed an expertise on a variety of issues involving the special needs of veterans of the armed forces who have experienced spinal cord injury or dysfunction. They seek quality health care for their members, research and education addressing spinal cord injury and dysfunction.
     
121. Phoenix Society for Burn Survivors
     
     
122. PKD Foundation
     
     
123. Progeria Research Foundation, Inc.
     
     
124. Project Compassion
     Durham-Chapel Hill area of North Carolina: Project Compassion provides support for people living with serious illness, caregiving, end of life and grief in the Durham-Chapel Hill area of North Carolina. Through Support Teams, Project Compassion's volunteers provide practical, emotional, and spiritual support for people who need help with caregiving so individuals and families will not have to cope alone.
     
125. Pulmonary Fibrosis Foundation
     
     
126. Pulmonary Hypertension Association
     
     
127. Restless Legs Syndrome Foundation
     
     
128. Sanofi-Aventis
     Sanofi-aventis U.S., based in Bridgewater, NJ, and employing 11,400 people across the country, is a diversified global healthcare leader that discovers, develops, produces and markets innovative therapies that enhance people’s lives. Our extensive research and development efforts are focused on health care challenges in cardiology, oncology and internal medicine, as well as metabolic diseases, central nervous system disorders, ophthalmology and vaccines.
     
129. Sarcoma Foundation of America
     Sarcoma is a rare cancer in adults (1% of all adult cancers), but rather prevalent in children (about 15% of all childhood cancers).  It is made up of many “subtypes” because it can arise from a variety of tissue structures (nerves, muscles, joints, bone, fat, blood vessels - these are collectively referred to as the body’s “connective tissues”). 
     
130. Scleroderma Foundation
     
     
131. Scleroderma Research Foundation
     
     
132. Scoliosis Research Society
     
     
133. Senior Cognitive Issues by Home Instead Senior Care
     Senior Cognitive Issues by Home Instead Senior Care; This video series addresses dealing with senior cognitive issues. Topics include: recognizing symptoms of cognitive problems, learning what might be causing them and methods for coping with a loved one who is suffering with these problems.
     
134. Senior Cognitive Issues, Part 1
     Senior Cognitive Issues by Home Instead Senior Care; Topics included in this video are: dealing with senior cognitive issues, recognizing symptoms of cognitive problems, learning what might be causing them and methods for coping with a loved one who is suffering with these problems.
     
135. Senior Cognitive Issues, Part 2: Definition and Symptoms
     Definition and Symptoms by Home Instead Senior Care; In this video, topics discussed include: what types of cognitive problems there are and describes some of their symptoms.
     
136. Senior Cognitive Issues, Part 3: Problems and Causes
     Problems and Causes by Home Instead Senior Care; In this video, topics discussed include: problems and causes that can lead to cognitive dysfunction or impairment.
     
137. Senior Cognitive Issues, Part 4: Coping with Cognitive Problems
     Coping with Cognitive Problems by Home Instead Senior Care; In this video, topics discussed include:coping mechanisms for helping a loved one who is suffering from cognitive dysfunction or impairment.
     
138. Sickle Cell Disease Association of America
     
     
139. Sickle Cell Information Center
     
     
140. Specialty Board on Fluency Disorders
     This website is designed to help consumers and professionals locate speech-language pathologists.
     
141. Spina Bifida Association of America
     
     
142. Spinal Cord Injury Information Network
     The site has extensive resources to cope with a spinal cord injury from the moment of injury and across one’s lifespan.
     
143. Spinal Muscular Atrophy Foundation
     
     
144. Spinal Victory
     Searching for the spinal cord injury cure.
     
145. Stroke Education
     Provides a list of stroke symptoms, tests and diagnosis and a link to an on-line support community
     
146. Stroke Safe
     Internet-centered coalition of stroke survivors and their families, in addition to doctors, nurses and therapists involved with stroke.
     
147. Transverse Myelitis Association
     
     
148. VHL Family Alliance
     
     
149. Wound, Ostomy, and Continence Nurses Society
     The WOCN Society is a professional nursing society that promotes educational, clinical and research opportunities to advance the practice and guide the delivery of health care to individuals with wounds, ostomies and incontinence.