DISEASE
Alzheimers Association leads the way to end Alzheimer’s and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Click on Help and Resources to find information on caregiving. If your Loved One has FTD, click on the Difference between Dementia and Alzheimers which drops down from “Alzheimers and Dementia” button on the home page.
Alzheimers Foundation of America AFA was founded by a family caregiver to be a resource for caregivers and a place they can turn to for help, guidance and support in their time of need. Provides excellent caregiver support, online memory screening and grants for innovative solutions or help for Alzheimer’s. A very thoughtful website. Newsletter sign up and translator.
American Cancer Society 1 in 2 men and 1 in 3 women will be diagnosed with cancer in their lifetime. If you’ve been recently diagnosed, or know someone who has, we’re here with answers, guidance, and support. Select the type of cancer from the “All about cancer” for specific information. Get financial help, information for caregivers, learn about treatments, how to cope palliative care and so much more.
American Diabetes Association If your LO has diabetes and you need more information, head here. Looking for ideas for meals- check out the “Food and Nutrition” tab. Newly diagnosed or just prescribed a CGM – there is information on those and many other topics as well.
American Heart Association and American Stroke Association Start here for information on these two diseases. The Health Topics button will lead you to information on specific issues, such as aortic aneurysms, arrhythmia, atrial fibrillation. The practical and helpful caregiver support is accessed here: https://www.heart.org/en/health-topics/caregiver-support
American Lung Association “When you can’t breathe, nothing else matters.® Our mission is To save lives by improving lung health and preventing lung disease”. Blog covers a variety of topics related to breathing and lung health, search bar to find specific information and a translator.
ALS Association mission is to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest. The “Newly Diagnosed” button will lead you to resources found in your state where you will find support in several different areas, such as equipment and technology, information, links to groups and other resources to help patient and family free of charge. An inspirational site.
American Parkinson Disease Association Check out the section on Education and Support.
Arthritis.com Practical straightforward information. Tools for talking with your doctor, include a symptom tracker and questions to ask form. Articles on living with arthritis and that explain the different types of the disease. Also a newsletter sign up. Disclosure: Provided by Pfizer.
Arthritis Foundation – Tag Line: Stay in the Know. Live in the Yes. Well organized site achieves that. Find a Doctor – type in your zipcode and a list of specialists in your area will appear. Section on managing arthritis pain. Translator to Spanish available. “Newly Diagnosed” button leads to helpful tips.
Association for Frontal Temporal Degeneration Click on the Find Support button for a list of resources that will help you advocate for your LO with these little known diseases. This is a site we used frequently and has grown considerably to provide not only information, but funding for research and education. They also offer small grants to families of those diagnosed with FTD. Comstock Grant provides money for expenditures on an annual basis. We were recipients and spent money on a wheelchair coat, items to keep the hands busy, adaptive clothing, etc. Another grant is for respite care for FTD caregivers.
Brain and Life Patient education from the American Academy of Nuerology. I picked this free magazine up in a doctor’s office. It has been a valuable resource, as has their website. The website information includes Caregiving tips, including financial tips, Brain Science with information on disease managegement, Brain Disorders from A to Z, including Sleep Apnea (surprise!) and podcasts on a variety of related topics. Sign up for the free magazine and/or one of the free email newsletters on specific related topics. Highly recommend if this fits your situation.
Bright Focus BrightFocus has funded nearly $300 million in research grants to more than 6,000 researchers across 25 countries seeking cures for Alzheimer’s disease, macular degeneration, and glaucoma. Each disease has a section of the website dedicated to information, treatments and resources for those diagnosed.
Cancer Care Find information on many different types of cancers, places to seek financial help, articles on how to cope with cancer, and recorded workshopeon coping with cancer, plus much more.
Cancer.org Cancer information and resources. Support for patients, families, and caregivers. A cancer diagnosis affects close family and friends too. Find out what to expect if you become a caregiver for a person with cancer, and get tips for making sure that you take care of yourself as well.
Dementia Society of America Their programs bring much-needed education, local resources, and life enrichment to individuals and families impacted by Dementia. Click the” Information” button to link to podcasts, youtube with 2-3 minute videos on different topics, blog posts and use the “Resources” button to subscribe to a free email newsletter.
Lewy Body Dementia Association Lewy body dementias (LBD) affect an estimated 1.4 million individuals in the United States. Through outreach, education and research, we support those affected by Lewy body dementias, their families and caregivers. We are dedicated to raising awareness and promoting scientificc advances.
The Leukemia & Lymphoma Society Dedicated to curing leukemia, lymphoma, myeloma, and other blood cancers. Home page has information for community support, contact information for treatment and clinical trials and financial support for those with blood cancer. The Dare to Dream project aims to improve the quality of life for every child with blood cancer.
Mental Health America the nation’s leading national nonprofit dedicated to the promotion of mental health, well-being, and illness prevention. “Get Help” will provide information for you to find help for yourself or someone else. “Get Information” has information about mental health facts and conditions, policy measures, and more, our research and reports, webinars, podcast, blog, and screening tools provide guiding resources and tools to help understand and improve your mental health.
National Aphasia Association Aphasia is a communication disorder that impairs a person’s ability to process language, but does not affect intelligence. Hosts regular Aphasia Café sessions, Zoom meetings for people with Aphasia, caregivers and care providers on specific topics. Information for those with aphasia, caregivers, research and find a camp/program. A database to search for aphasia centers, support groups, and speech pathologists specializing in aphasia programming. aphasia ID card, etc.
National Association for Continence Website provides information on s bladder and urinary conditions, Find a Doctor lists, newsletter sign up, answers to questions as “do I have an UTI or a bladder infections” , printable patient resources such as symptom trackers and more.
National Incontinence This website earns an exemption to our no sales websites policy. They do sell many brands of adult briefs, bed pads and other essentials, but you can access valuable information whether you buy or not. Information includes types of incontinence, how to choose the best product, tips from how to use products, hygiene, removing odors and stains, types of bedding to use and more. Also a blog on topics such as blood sugar and incontinence, adult swim briefs or a wearable device that senses bladder expansion and alerts when it’s time to use the bathroom. A Simon Foundation for Continence Website.
National Multiple Sclerosis Society Information on types of MS, what to know and do when newly diagnosed, find doctors experience in treating MS, how to manage MS. and support to navigate the best life through the challenges of MS
National Organization for Rare Disorders NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives. Great site. I recommend starting with the “Living with a Rare Disease” and choosing your topic from the menu on the left, for a better overview. Don’t miss the graphic at the bottom linking to resources in your state. Look for the link on the right for “Patient assistance programs”. And note the “Patient Organization” link at the top of the page for groups for specific rare diseases.
The National Task Group on Intellectual Disabilities and Dementia Practices “The ‘NTG’ is a not-for-profit organization charged with ensuring that the interests of adults with intellectual and developmental disabilities who are affected by Alzheimer’s disease and other causes of dementia – as well as their families and friends – are taken into account. The NTG’s overall mission is to advocate for services and supports for people with intellectual disability and their families who are affected by Alzheimer’s disease and dementias.” Information can easily be accessed by topic from the main page.
Well Spouse Association , Advocates for and addresses the needs of individuals caring for a chronically ill and/or disabled spouse or partner. We offer peer support and educate health care professionals and the general public about the special challenges and unique issues “well” spouses face every day.
