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Resources for Specific Conditions

Not-for-profit Organizations

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AARP Family Caregiving

Find free care guides, legal checklists, care options and an online community that supports all types of family caregivers.

https://www.aarp.org/caregiving/
AARP’s Family Caregiving site provides information, tools and resources to help those caring for a loved one on their journey. Caregiving experts provide information in blogs, webinars and one-on-one interaction through social media channels. The site’s supportive online community can help you connect with others experiencing similar caregiving challenges. Best of all, most of this content is accessible even if you aren’t a member of AARP.

Aging Care https://www.agingcare.com/
This site offers caregiving guides, tips, a forum with a robust question and answer section, and assistance on finding care in your local community.

Alzheimer’s Association

https://www.alz.org/

https://www.alz.org/help-support/caregiving
The Alzheimer’s Association provides details on what to expect for each stage of Alzheimer’s disease and other dementias. You can learn about behaviors specific to Alzheimer’s disease, links to local respite care, legal and financial advice, and local caregiver support groups. There is a great caregiver message board, and a pragmatic stress test. Note: this is just one example of a site designed to help caregivers of loved ones with a very specific ailment. Use Google to find caregiving tips for just about any illness impacting the person you are caring for.

American Brain Tumor Association
CarelLine: 1-800-886-ABTA (1-800-866-2282)
abta.org
Facebook for ABTA

American Cancer Societyy

http://www.cancer.org/

American Cancer Societyy
Telephone: 1-800-227-2345
Live chat available

Facebook for ACS

American Parkinson Disease Association

The American Parkinson Disease Association (APDA) is the largest grassroots network dedicated to fighting Parkinson’s disease (PD) and works tirelessly to help the approximately one million with PD in the United States live life to the fullest in the face of this chronic, neurological disorder. Founded in 1961, APDA has raised and invested more than $207 million to provide outstanding patient services and educational programs, elevate public awareness about the disease, and support research designed to unlock the mysteries of PD and ultimately put an end to this disease. To join us in the fight against PD and to learn more about the support APDA provides nationally through our network of Chapters and Information & Referral (I&R) Centers, as well as our national Research Program and Centers for Advanced Research, please visit us at www.apdaparkinson.org.

American Stroke Association

www.stroke.org

Stroke is the No. 2 cause of death worldwide and a leading cause of disability. The American Stroke Association is a relentless force for a healthier world with fewer strokes. We team with millions of volunteers to prevent, treat and beat stroke by funding innovative research, fighting for stronger public health policies, and providing lifesaving tools and information. The Dallas-based association was created in 1998 as a division of the American Heart Association. To learn more or to get involved, call 1-888-4STROKE, 1-888-478-7653, or visit stroke.org. Follow us on Facebook and Twitter.

The Association of Gastrointestinal Motility Disorders, Inc. (AGMD)

www.agmdhope.org

The Association of Gastrointestinal Motility Disorders, Inc. (AGMD) was incorporated in 1991 and is one of the oldest nonprofit organizations in existence, with a focus on digestive motility diseases and disorders. Our international organization brings together a diverse group of individuals: patients, family members, physicians, nurses, basic science and clinical researchers, pharmaceutical and diagnostic professionals, home health care workers, dietitians, biotech industrialists, other organizations and those in the community interested in digestive motility diseases and disorders.

We provide a variety of resources and programs centering on education, the dissemination of information, advocacy, outreach, research and support.

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CancerCare

https://www.cancercare.org/

CancerCare
Broad spectrum of resources for cancer survivors, including access to oncology social workers, support groups, Connect Education Workshops and financial assistance; please see below for a link to A Helping Hand – CancerCare’s 2018 resource guide for people with cancer
Telephone: 1-800-813-HOPE (4673)
cancercare.orgor A Helping Hand
Facebook for CancerCare

CancerCare for Kids
Online support groups for teens; telephone support for parents nationwide
Telephone: 1-800-813-HOPE ( 1-800-813-4673)
cancercare.org/tagged/children
Facebook for CancerCare

Cancer.net

www.cancer.net

The best cancer care starts with the best cancer information. With nearly 45,000 members who are leaders in advancing cancer care, the American Societyy of Clinical Oncology (ASCO) is the voice of the world’s cancer physicians. ASCO’s patient information website — Cancer.Net (www.cancer.net) — brings the expertise and resources of ASCO to people living with cancer and those who care for and care about them. Well-informed patients are their own best advocates and invaluable partners for physicians. Cancer.Net provides timely, comprehensive information to help patients and families make informed health care decisions. Cancer.Net is supported by Conquer Cancer ® The ASCO Foundation.

 

Camp Mak-A-Dream
Located in Montana; cost-free camps for children, teens, young adults and women with cancer, as well as programs for children who have a sibling or parent with cancer
Telephone: 1-406-549-5987
campdream.org
Facebook for camp dream

caregiveraction.org

https://caregiveraction.org/

Facebook for network

1-202-454-3970

Formerly known as the  National Family Caregivers Association, it provides information and education for family caregivers, including a volunteer support network in over 40 states. This site offers practical lists for immediate help with caregiving: patient file checklist, doctors’ office checklist, how to find a support group, medication checklist, independent living assessment and helpful videos. This site is easy to navigate, taking you through step-by-step processes to help get a handle on caregiving.

Caregiver Support Services https://www.caregiversupportservices.com/
Some of you might find that caring for a loved one is a second calling. You are a natural and want to learn more so you take can step up your game even further. Caregiver Support Services supports family and professional caregivers through direct services such as trainings on medication, how to become a personal assistant or a nursing assistant, case management, employee assistance, Alzheimer’s and HIV/AIDS, as well as self-advocacy and other pertinent services. The site includes sections on training, caregiver assessment, and caregiver wellness.

Caregivers4Cancer
Telephone: 1-800-787-2840
caregivers4cancer.com
No Facebook page

Caring Bridge https://www.caringbridge.org/
Sometimes the burden of giving care can be lightened by sharing with others. CaringBridge.org connects families and friends around the person with health issues through free, private websites where users share updates and support.

Caring.com https://www.caring.com/
This website offers a virtual library of caregiver resources and specializes in reviewing professional senior care resources all over the country, such as: assisted living providers, home health, personal care services, etc.

Children with Hair Loss 

About Children With Hair Loss

Children With Hair Loss is a 501 (c) 3 non-profit organization that provides human hair replacements at no cost to children and young adults facing medically-related hair loss.  When a child’s hair is lost due to Cancer treatments, Alopecia, Trichotillomania, Burns, etc., the painful effects are far deeper than just cosmetic.  Each year, the number of children requesting our hair replacements increases and with your support, we can continue to increase the number of children we are able to help in the future!

 

Colorectal Cancer Alliance
Includes peer-to-peer support via their Buddy Program
Helpline: 1-877-422-2030
ccalliance.org
Facebook for ccalliance

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Family Caregiver Alliance

https://www.caregiver.org/

For more than 40 years, FCA has provided services to family caregivers of adults with physical and cognitive impairments, such as Parkinson’s, stroke, Alzheimer’s and other types of dementia. Our services include assessment, care planning, direct care skills, wellness programs, respite services, and legal/financial consultation vouchers. Ongoing support is available with FCA, also now on a digital service platform. FCA is a longtime advocate for caregivers in the areas of policy, health and social system development, research, and public awareness, on the state, national and international levels.

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Hospice Foundation of America

Provides information on issues related to hospice and end-of-life care.

www.hospicefoundation.org

Hospice Care and Resources

HFA is a trusted source of information on end of life, hospice care and grief. Throughout this site you will find information about living with advanced life-limiting illness, options for care and helpful resources for caregivers.

800-854-3402

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Imerman Angels
Telephone: 1-866-IMERMAN (1-866-463-7626)
imermanangels.org
Facebook for imerman

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Kids Konnected
Resources for age-appropriate books and examples of discussions to have with children
Telephone: 1-949-484-9092
Facebook for kidskonnected

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Leukemia & Lymphoma Societyy

https://www.lls.org

Leukemia & Lymphoma Societyy

Includes peer-to-peer support via the Patti Robinson Kaufmann First Connection Program
Telephone: 1-800-955-4572
Weekly online chats available for different diagnoses and for young adults
lls.org
Facebook for LLS

Leukemia & Lymphoma Societyy: Childhood Blood Cancer
Telephone: 1-800-955-4572
Live chat available
lls.org/childhood-blood-cancer
Facebook for LLS

LIVESTRONG
Telephone: 1-855-220-7777
livestrong.org
Facebook for livestrong

LIVESTRONG Adolescents & Young Adults

LIVESTRONG Adolescents & Young Adults
Telephone: 1-855-220-7777
livestrong.org/we-can-help/young-adults
Facebook for livestrong

Lung Cancer Alliance
Helpline: 1-800-298-2436
lungcanceralliance.org
Facebook for LCA_GO2

Lung Cancer Center

“Since 2003, our leadership team has strived to provide patients and their families with information and resources to deal with debilitating, asbestos-related diseases. We partner with one of the country’s most experienced lung cancer law firms and have established relationships with some of the nation’s most renowned lung cancer treatment specialists.”

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Meal Train

https://www.mealtrain.com/

INCLUDES ALL THIS!
  • Interactive online calendar
  • Reminder emails sent to participant 1 week and also 1 day prior to date
  • Organizer email options. Receive alerts when dates are booked or cancelled
  • Ability to list meal preferences and allergies
  • Digital gift cards for Grubhub, DoorDash, restaurants, and more
  • Organizer and Recipient can book dates for others
  • Invitations via email, Facebook, Twitter, and more
  • Easily share updates and photos with family and friends
  • Allow participants to make financial contributions
  • Editable at any time by organizer or recipient

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National Cancer Institute (NCI) at the National Institutes of Health

https://www.cancer.gov/about-cancer

The National Cancer Institute (NCI) is the federal government’s principal agency for cancer research and training.

Our team of approximately 3,500 is part of the National Institutes of Health (NIH), one of 11 agencies that make up the Department of Health and Human Services (HHS). NCI is deeply committed to the core values of equity, diversity, and inclusion that allow all staff to reach their potential and fully contribute to the Institute’s cancer mission.

The National Children’s Cancer Societyy
Telephone: 1-314-241-1600 (the Societyy requests contact via various e-mails listed on website)
thenccs.org
Facebook for the NCCS

National Diabetes Education Program

https://www.niddk.nih.gov/health-information/community-health-outreach/information-clearinghouses?dkrd=lgdmw0001

NIDDK research creates knowledge about and treatments for diseases that are among the most chronic, costly, and consequential for patients, their families, and the Nation.

 

National Institute of Arthritis and Musculoskeletal and Skin Diseases

https://www.niams.nih.gov/health-topics/arthritis

The mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases is to support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases; the training of basic and clinical scientists to carry out this research; and the dissemination of information on research progress in these diseases.

National Institute of Mental Health

https://www.nimh.nih.gov/health/topics/post-traumatic-stress-disorder-ptsd/

The National Institute of Mental Health (NIMH) is the lead federal agency for research on mental disorders. NIMH is one of the 27 Institutes and Centers that make up the National Institutes of Health (NIH), the largest biomedical research agency in the world. NIH is part of the U.S. Department of Health and Human Services (HHS).

National Kidney Disease Education Program

https://www.niddk.nih.gov/health-information/community-health-outreach/information-clearinghouses/nkdep?dkrd=lgdmw0002

NIDDK research creates knowledge about and treatments for diseases that are among the most chronic, costly, and consequential for patients, their families, and the Nation.

The National LGBT Cancer Network
Telephone: 1-212-675-2633
Facebook for cancer network

American Stroke Association |

www.stroke.org

World Stroke Day

Did you know one in six of us will experience stroke in our lifetime? And there are an estimated 17 million strokes worldwide each year? For World Stroke Day on October 29th, the American Stroke Association is educating on the F.A.S.T. warning signs and bringing together stroke survivors, caregivers and healthcare professionals to show that there is life – and hope – after stroke.

National Family Caregivers Month

The stroke survivor’s family is often the most important source of long-term support during recovery and rehabilitation. But who takes care of the caregiver? In November, help us recognize those who give support, because caregivers deserve our appreciation too!

Needy Meds

needymeds.org

Provides information on how to find pharmaceutical assistance programs

1-800-503-6897

https://www.needymeds.org/helpline

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OncoLink.org
Website of the University of Pennsylvania Cancer Center which serves as an educational site for patients and families providing information at various levels
Telephone: 1-215-349-8895 (for Partnership information only; education questions via e-mail)
oncolink.org
Facebook for oncolink

Oral Cancer Foundation
Telephone: 1-949-723-4400
oralcancerfoundation.org
Facebook for OCF

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Parent Education Network

The Parent Education Network (PEN) is part of a national system of Parent Training and Information Centers (PTIs), serving South Central, Northeast, Southeast and Philadelphia, Pennsylvania. We are funded by the US Department of Education and the Pennsylvania Department of Education. 2009 marked our 25 year anniversary of service to parents of children with disabilities. PEN is a coalition of professionals and parents of children representing a range of disabilities and ages. We are committed to serving parents of all special needs children– birth to adulthood; including parents of children in pre-school, regular education classes, educational/residential placement, adult systems and those children not yet identified as needing service.

Parkinson’s Foundation

https://www.parkinson.org/

The Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community.

Prostate Cancer Foundation
Telephone: 1-800-757-CURE (1-800-757-2873)
pcf.org
Facebook for PCF

PTSD: National Center for PTSD

https://www.ptsd.va.gov/

The mission of the National Center for PTSD is to advance the clinical care and social welfare of America’s Veterans and others who have experienced trauma, or who suffer from PTSD, through research, education, and training in the science, diagnosis, and treatment of PTSD and stress-related disorders.

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