Who We Are

The Neuropalliative Nonprofit Collaborative (NPNPC)  is a community of nonprofits and partners working together to make sure people and families affected by neurological illness have access to the care and support they need—when they need it. We believe everyone deserves compassionate, high-quality palliative care that honors their experiences and goals, and we’re uniting our efforts to make that a reality around the world.


What We Do

We share knowledge, stories, and resources to make care more connected and responsive. Together, we:

  • Raise awareness about the value of palliative care across neurological conditions
  • Create and share practical tools, education, and training for families and professionals
  • Build networks that connect people to trusted support and community
  • Advocate for systems and policies that make high-quality care accessible to all


By working together, we amplify our collective voice and help every person and family affected by neurological illness feel supported, understood, and never alone.
 

Participating Organizations' Resources
For a complete list of member organizations, please click here.

 

AFTD (Association for Frontotemporal Degeneration)
AFTD accelerates scientific discovery, improves care, and brings hope to families affected by frontotemporal degeneration.
Website: www.theaftd.org Helpline: 1-866-507-7222
Palliative Resources: www.theaftd.org/?s=palliative

ALS Association
Drives research, provides care and support, and advocates for people living with ALS and their families.
Website: als.org
Palliative Resources: www.als.org/navigating-als/living-als/therapies-care/palliative-care-als

ALS Network
Our Mission: To partner with the ALS community as we drive the discovery of prevention strategies, treatments, and cures for ALS; provide access to quality care and connection; and promote initiatives to improve health outcomes.
Website: https://alsnetwork.org/
Palliative Resources: Living Fully, Living Well Palliative Care for ALS webinar

I AM ALS
I AM ALS is accelerating a cure for ALS by mobilizing collective power to drive urgent policy and systems change. Our vision: a world without ALS.
Website: https://www.iamals.org/ Helpline: 866-942-6257
Palliative Resources: The Role of Palliative Care in ALS webinar

Les Turner ALS Foundation
The Les Turner ALS Foundation was created to fill a critical gap in research, information, and support for families facing the disease. The Foundation is the Midwest’s leading ALS organization, providing comprehensive care, education, and support while advancing groundbreaking research through the Les Turner ALS Center at Northwestern Medicine.
Website: https://lesturnerals.org/
Palliative Resources:

Alzheimer’s Association
Supports individuals with Alzheimer’s disease and related dementias along with their caregivers through education, research, and advocacy.
Website: www.alz.org Helpline: 800-272-3900
Palliative Resources: Advanced Care Planning

American Parkinson Disease Association (APDA)
APDA works tirelessly every day to support and empower anyone who is impacted by Parkinson’s disease (PD). Our nationwide network provides connection and community along with information and referral, education and support programs, health and wellness activities, and other events to facilitate a better quality of life, while also funding vital research. It is this grassroots structure that distinguishes APDA from other organizations serving people with PD.
Website: www.apdaparkinson.org
Helpline: 800-223-2732
Palliative Resources: www.apdaparkinson.org/?s=palliative

Consortium of Multiple Sclerosis Centers (CMSC)
Advances multiple sclerosis care through education, research, and collaboration among clinicians and organizations.
Website: www.mscare.org
Palliative Resources: Comprehensive Palliative Care in MS

CurePSP
Raise awareness, build community, improve care and find a cure for progressive supranuclear palsy, corticobasal degeneration and multiple system atrophy.
Website: www.psp.org
Helpline:800-457-4777
Palliative Resources:

Davis Phinney Foundation
We help people with Parkinson’s to live well today through education, tools, and community connection.
Website: davisphinneyfoundation.org
Palliative Resources:

Family Caregiver Alliance
Leads through policy, education, and support programs for family caregivers across the U.S.
Website: www.caregiver.org
Palliative Resources:

Help4HD
Help 4 HD's mission is to educate the world about Huntington's disease and Juvenile Huntington's disease. The aim is to serve our community and provide information, education, and resources.
Website: https://www.help4hd.org/

HD Reach
HD Reach is working to improve the care and quality of life of those affected by Huntington’s disease. Founded as a nonprofit in 2009, we provide connections to medical providers, referrals to local services, care management, family support, education, and anonymous genetic testing.
Website: https://www.hdreach.org/

HDYO
The Huntington's Disease Youth Organization is an international non-profit supporting, educating, and empowering young people up to 35 years, impacted by Huntington's Disease (HD).
Website: https://www.hdyo.org/

Huntington’s Disease Society of America (HDSA)
Provides comprehensive services, supports research, and improves care and quality of life for people with Huntington’s disease and their families.
Website: www.hdsa.org  
Helpline: 1-800-345-HDSA (4372)
Palliative Resources: Advanced Directives for Huntington’s Disease

International Alliance of ALS/MND Associations
A global network of ALS/MND organizations collaborating to share information and advance care, advocacy, and research.
Website: als-mnd.org

International Neuropalliative Care Society (INPCS)
Builds global capacity and networks to integrate palliative care into the management of neurologic illness.
Website: www.inpcs.org
Palliative Resources:

Lewy Body Dementia Association (LBDA)
Provides support, education, and advocacy for people living with Lewy body dementia and their caregivers.
Website: lbda.org
Helpline: 800.539.9767
Palliative Resources:

Michael J. Fox Foundation for Parkinson’s Research
Invests in research to find a cure for Parkinson’s disease while improving quality of life for those living with it today.
Website: michaeljfox.org
Palliative Resources:

Mission MSA
Supports people affected by Multiple System Atrophy and their families through education, resources, and community.
Website: missionmsa.org
Palliative Resources:

Muscular Dystrophy Association
Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and related neuromuscular diseases. For 75 years, MDA has led the way in accelerating research, advancing care, and advocating for the support of our families.
Website: www.mda.org
Palliative Resources:

National Brain Tumor Society
Accelerates research, offers patient and caregiver support, and advocates for those affected by brain tumors.
Website: braintumor.org
Palliative Resources: Palliative Care

Parkinson’s Foundation
Supports people with Parkinson’s and care partners through research, education, and community programs designed to improve quality of life.
Website: www.parkinson.org
Helpline: 800.473.4636
Palliative Resources:

Parkinson & Movement Disorder Alliance (PMD Alliance) 
Builds community and resilience for people impacted by Parkinson’s and movement disorders through programs, education, and support.
Website: pmdalliance.org
Palliative Resources:

Parkinson’s UK
Supports people living with Parkinson’s in the UK through research, care information, and community programs.
Website: parkinsons.org.uk
Palliative Resources: Palliative care

Spastic Paraplegia Foundation 
Funds research and provides support for people affected by hereditary spastic paraplegia and primary lateral sclerosis.
Website: sp-foundation.org
 



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