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Community Resources I-P
Kidney
American Kidney Fund
Contact Information
800-638-8299, online form required,
Organization Purpose:
The American Kidney Fund (AKF) fights on all fronts for 37 million Americans living with kidney disease. Thanks to our compassionate community, we can be there for patients wherever they are in their illness. No other organization takes a more comprehensive approach, or makes a greater direct impact on patients’ lives.
National Kidney Disease Education Program
Contact Information
https://www.niddk.nih.gov/health-information/communication-programs/nkdep?dkrd=lgdmn0031
1-800-860-8747, TTY: 711, healthinfo@niddk.nih.gov,
Organization Purpose:
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 Kidney Foundation
Contact Information
(800) 622-9010, info@kidney.org,
Organization Purpose:
Fueled by passion and urgency, National Kidney Foundation is a lifeline for all people affected by kidney disease. As pioneers of scientific research and innovation, NKF focuses on the whole patient through the lens of kidney health. Relentless in our work, we enhance lives through action, education and accelerating change.
Liver
American Liver Foundation
Contact Information
215-425-8080, online form required,
Organization Purpose:
ALF provides resources and support for caregiver, education and training, and promotes research for a cure.
Lung Disease
American Lung Association
Contact Information
1-800-586-4872, info@lung.org,
Organization Purpose:
The American Lung Association is the leading organization working to save lives by improving lung health and preventing lung disease.
Mental Health
National Mental Health Association
Contact Information
703-684-7722, online form required,
Organization Purpose:
Mental Health America (MHA) – founded in 1909 – is the nation’s leading community-based nonprofit dedicated to addressing the needs of those living with mental illness and to promoting the overall mental health of all Americans. Our work is driven by our commitment to promote mental health as a critical part of overall wellness, including prevention services for all; early identification and intervention for those at risk; integrated care, services, and supports for those who need it; with recovery as the goal.
Mitochondrial Disease
Children’s Mitochondrial Disease Network
Contact Information
http://www.emdn-mitonet.co.uk/
440160643946 (international calling), info@cmdn.org.uk,
Organization Purpose:
The Children’s Mitochondrial Disease Network (CMDN) is an international, non-profit organization dedicated to providing information and support to individuals, families, and medical professionals affected by, or interested in, mitochondrial disorders. CMDN was established in 1998 and its objectives include promoting research into the causes and treatment of mitochondrial disorders in children and adults; providing support and information to parents, caregivers, and medical professionals; and contributing financial assistance to healthcare professionals interested in attending professional conferences that will further understanding of causes and treatments of mitochondrial disorders. Other programs and educational services available through CMDN include information on a wide range of mitochondrial disorders written in understandable lay terminology; a 24-hour help line available to parents and professionals; and disease-specific information searches.
United Mitochondrial Disease Foundation
Contact Information
http://www.umdf.org 1-888-317-UMDF (8633), info@umdf.org,
Organization Purpose:
Promote research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families.
MultipleSclerosis
Multiple Sclerosis Association of America
Contact Information
(800) 532-7667, msaa@mymsaa.org,
Organization Purpose:
MSAA is a national, nonprofit organization founded in 1970. Our organization is dedicated to improving lives today through ongoing support and direct services to individuals with MS, their families, and their care partners.
Multiple Sclerosis Foundation
Contact Information
888-MSFOCUS (673-6287), support@msfocus.org,
Organization Purpose:
The mission of the Multiple Sclerosis Foundation is to provide programs and support services to those persons affected by MS that help them maintain their health, safety, self-sufficiency, and personal well-being; and to heighten public awareness of multiple sclerosis in order to elicit financial support for the Foundation’s programs and services and promote understanding for those diagnosed with the illness.
National Multiple Sclerosis Society
Contact Information
https://www.nationalmssociety.org/
1-800-344-4867, online form required,
Organization Purpose:
The Society’s mission is to cure MS while empowering people affected by MS to live their best lives.
Muscular Dystrophy
Muscular Dystrophy Association
Contact Information
1-833-ASK-MDA1 (1-833-275-6321), ResourceCenter@mdausa.org,
Organization Purpose:
Families are at the heart of MDA’s mission. A caring and concerned group of families started MDA in 1950, and we continue to relentlessly pursue our promise to transform the lives of people living with muscular dystrophy, ALS and related neuromuscular diseases, through research, care and advocacy. Read more about MDA’s journey and the progress we’ve helped make possible.
Myasthenia Gravis
Myasthenia Gravis Foundation of America
Contact Information
800-541-5454, mgfa@myasthenia.org,
Organization Purpose:
The Myasthenia Gravis Foundation of America (MGFA) is committed to finding a cure for myasthenia gravis and closely related disorders. Our vision is to create a world without MG. Learn more about how we support those with MG and work towards a cure here.
Myositis
Myositis Association
Contact Information
800-821-7356, TMA@myositis.org,
Organization Purpose:
To improve the lives of persons affected by myositis, fund innovative research and increase myositis awareness and advocacy
Neurological Disorder
NIH/National Institute of Neurological Disorders and Stroke
Contact Information
(800) 352-9424, email online,
Organization Purpose:
NINDS’ mission is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease for all people.
Osteogenesis Imperfecta
Osteogenesis Imperfecta Foundation
Contact Information
Phone: 301-947-0083 Toll free: (844) 889-7579, bonelink@oif.org,
Organization Purpose:
The OI Foundation provides medically verified information to families and healthcare professionals, funds new OI research and promotes public policy that supports people living with osteogenesis imperfecta.
Osteopoorosis
Bone Health & Osteoporosis Foundation
Contact Information
800-231-4222, info@bonehealthandosteoporosis.org,
Organization Purpose:
For over 35 years, the Bone Health & Osteoporosis Foundation (BHOF) has been committed to preventing osteoporosis and promoting awareness about bone health. Learn more about our organization.
Ostomy
United Ostomy Association
Contact Information
800-826-0826, online form required,
Organization Purpose:
UOAA Promotes quality of life for people with ostomies and continet diversions through informaiton, support, advocacy and collaboration.
Pain
Chronic Pain Management
Contact Information
913-991-4740, acpa@theapca.org,
Organization Purpose:
ACPA offers peer support and education in pain management skills to people with pain, family and friends, and health care professionals.
Parkinson
Davis Phinney Foundation for Parkinson’s
Contact Information
https://www.davisphinneyfoundation.org/
1-866-358-0285, contact@dpf.org,
Organization Purpose:
We help people with Parkinson’s live well today. Since 2004, the Davis Phinney Foundation has brought to life some of the most important programs, research, content, and events for those affected by Parkinson’s. Our community includes people living with Parkinson’s, Parkinson’s care partners, families and friends of those living with Parkinson’s, physicians, and Parkinson’s allied health professionals.
Muhammad Ali Parkinson Center
Contact Information
https://www.barrowneuro.org/get-to-know-barrow/centers-programs/muhammad-ali-parkinson-center/
877-876-9649, online form required,
Organization Purpose:
Our team of neurologists, nurses, physical therapists, occupational therapists, and speech-language pathologists is dedicated to providing you with the best clinical care, research, rehabilitation, education, and support. Our demonstrated commitment to these areas has earned us the distinction as a Parkinson’s Foundation Center of Excellence. We are also a world leader in Deep Brain Stimulation (DBS) surgery for the treatment of movement disorders.
Parkinson’s Foundation
Contact Information
1-800-4PD-INFO (473-4636), Helpline@Parkinson.org,
Organization Purpose:
The Parkinson’s Foundation makes life better for people with Parkinson’s disease (PD) 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.
The Michael J. Fox Foundation
Contact Information
1-212-509-0995, info@michaeljfox.org,
Organization Purpose:
The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson’s disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson’s today.
American Parkinson Disease Association
Contact Information
https://www.apdaparkinson.org/
800-223-2732, apda@apdaparkinson.org,
Organization Purpose:
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 $226 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.
Patient Education
Parent Education Network
Contact Information
(307) 684-2277, tdawson@wpic.org,
Organization Purpose:
The Parent Education Network’s (PEN) purpose is to offer learning strategies to parents and technical assistance to schools and families to increase meaningful family engagement linked to learning, to ultimately increase student success. PEN is a project of Parents Helping Parents of Wyoming, Inc. a statewide non-profit parent organization.
Post Traumatic Stress Disorder
National Center for PTSD
Contact Information
Voice Mail: (802) 296-6300; Call 988 in a crisis or 911 in an emergency, ncptsd@va.gov,
Organization Purpose:
We are the world’s leading research and educational center of excellence on PTSD and traumatic stress. PTSD is a mental health problem that some people develop after experiencing or witnessing a life-threatening or traumatic event. If symptoms last more than a few months, it may be PTSD. The good news is that there are effective treatments.
Psoriasis
National Psoriasis Foundation
Contact Information
800-723-9166, getinfo@psoriasis.org,
Organization Purpose:
National Psoriasis Foundation provides you with the help you need to best manage your psoriasis or psoriatic arthritis, while promoting research to find a cure.
