SURVEY: Help Us Learn about the Role of the Caregiver in Medical Decisions

If you’ve taken on caregiving for a loved one in recent years and face the challenges of balancing the healthcare needs of your loved one with your own needs, we want to hear your views.

The role of the caregiver, particularly in medical decision-making, is a role taken on urgently, without warning – and often with little expertise.  Yet the needs, challenges and issues that we face as we voluntarily care for loved ones with chronic and/or debilitating illnesses or conditions can be overwhelming and time-consuming.

Our hope is that your insights will help lead to better support for caregivers in this important role. More than 70 organizations are partnering on this survey because of their keen interest in helping you, the caregiver, as you navigate medical and care decisions that affect you and your loved one.

Findings from the survey will be published, shared widely through our partners’ networks and posted on the Rx4good website. If you have questions about the survey, please contact us at

Thank you in advance for your participation!

Take the survey now!

Acres GlobalAGTC
Alagille Syndrome AllianceAlkermes
Alpha-1 FoundationAmerican Cancer Society
American Chronic Pain AssociationAmerican Heart Association
American Medical Women's AssociationAmerican Syringomyelia and Chiari Alliance Project
AmgenAngelman Biomarkers and Outcome Measures Alliance
Cancer Support CommunityCancerCare
Caregiver Action NetworkCharlotte and Gwenyth Gray Foundation to Cure Batten Disease
Cholangiocarcinoma FoundationColorectal Cancer Alliance
Critical MassDC Outreach
EMD SeronoEnd Brain Cancer Initiative
EnzyvantEpilepsy Foundation
Evans Syndrome FoundationFamily Voices NJ
First DescentsFood Allergic Adults Support Group
g6pd Deficiency FoundationGlobal Genes
HealthyWomen.orgHereditary Neuropathy Foundation (HNF Cure)
Hermansky-Pudlak Syndrome NetworkHorizon Pharma
Ionis Patient AdvocacyKite Pharma
Les Turner ALS FoundationLeukemia & Lymphoma Society
Luck FupusMedical Education Institute
Mended HeartsMended Little Hearts
MerckMS Focus
National Alliance for CaregivingNational Alliance on Mental Illness
National Blood Clot AllianceNational Osteoporosis Foundation
National Register of Health Service PsychologistsNational Stroke Association
NTMinfoParent Project Muscular Dystrophy
Parkinson's Resource OrganizationPatvocates
Patient Empowerment Network (Powerful Patients)PTC Therapeutics
RUN - Rare & Undiagnosed NetworkSage Therapeutics
SantheraShort Bowel Syndrome Foundation
SharsheretSofia Sees Hope
Spark TherapeuticsTeen Cancer America
TesaroThe Samfund
Ulman Cancer Fund for Young AdultsUS Pain Foundation
Vestibular Disorders AssociationWilson Disease Association