SURVEY: Help Us Learn about the Role of the Caregiver in Medical Decisions
- by: Ann Moravick |
April 17, 2018 - Categories:
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 info@rx4good.com.
Thank you in advance for your participation!
| Acres Global | AGTC |
| Alagille Syndrome Alliance | Alkermes |
| Alpha-1 Foundation | American Cancer Society |
| American Chronic Pain Association | American Heart Association |
| American Medical Women's Association | American Syringomyelia and Chiari Alliance Project |
| Amgen | Angelman Biomarkers and Outcome Measures Alliance |
| Cancer Support Community | CancerCare |
| Caregiver Action Network | Charlotte and Gwenyth Gray Foundation to Cure Batten Disease |
| Cholangiocarcinoma Foundation | Colorectal Cancer Alliance |
| Critical Mass | DC Outreach |
| EMD Serono | End Brain Cancer Initiative |
| Enzyvant | Epilepsy Foundation |
| Evans Syndrome Foundation | Family Voices NJ |
| First Descents | Food Allergic Adults Support Group |
| g6pd Deficiency Foundation | Global Genes |
| HealthyWomen.org | Hereditary Neuropathy Foundation (HNF Cure) |
| Hermansky-Pudlak Syndrome Network | Horizon Pharma |
| Ionis Patient Advocacy | Kite Pharma |
| Les Turner ALS Foundation | Leukemia & Lymphoma Society |
| Luck Fupus | Medical Education Institute |
| Mended Hearts | Mended Little Hearts |
| Merck | MS Focus |
| National Alliance for Caregiving | National Alliance on Mental Illness |
| National Blood Clot Alliance | National Osteoporosis Foundation |
| National Register of Health Service Psychologists | National Stroke Association |
| NTMinfo | Parent Project Muscular Dystrophy |
| Parkinson's Resource Organization | Patvocates |
| Patient Empowerment Network (Powerful Patients) | PTC Therapeutics |
| RUN - Rare & Undiagnosed Network | Sage Therapeutics |
| Santhera | Short Bowel Syndrome Foundation |
| Sharsheret | Sofia Sees Hope |
| Spark Therapeutics | Teen Cancer America |
| Tesaro | The Samfund |
| Ulman Cancer Fund for Young Adults | US Pain Foundation |
| Vestibular Disorders Association | Wilson Disease Association |