Rare Disease Caregivers – The Survey

Rare diseases do not just affect the patient. They affect the entire family. One group that is educating people—including policy makers and insurance companies—about the sacrifices that caregivers of people with rare and chronic conditions must make physically, emotionally, and financially, is the National Alliance of Caregiving.
This month, the National Alliance of Caregiving, along with Global Genes, are conducted a survey of rare disease caregivers that they hope will further educate people about the important role that caregivers have in the management of rare disease patients. The survey ends October 31, 2017.

Recently, we talked with C. Grace Whiting, Chief Operating Officer at National Alliance of Caregiving about their organization and why the rare disease caregiver survey is so important.

Rare Disease Report: What is the National Alliance for Caregiving?

Whiting: Established in 1996, the National Alliance for Caregiving is a non-profit coalition of national organizations focusing on advancing family caregiving through research, innovation, and advocacy. The Alliance conducts research, does policy analysis, develops national best-practice programs, and works to increase public awareness of family caregiving issues.

Recognizing that family caregivers provide important societal and financial contributions toward maintaining the well-being of those they care for, the Alliance is dedicated to improving quality of life for families and those they care for through research, innovation, and advocacy.

RDR: What is the purpose of the Rare Disease Survey?

The Caregivers of Persons with Rare Disease study, conducted in partnership with Global Genes, will identify the challenges facing the families who support the 25 million Americans who are managing a rare disease. Many family caregivers report anecdotally that they experience unique challenges related to time to diagnosis, access to appropriate medical care and medications, and emotional burden from managing the uncertainty of the disease and its prognosis. It is anticipated that in addition to these unique barriers, family caregivers who help a loved one with a rare disease also share in the obstacles faced by caregivers in the aging and disability community (and may be able to benefit from existing resources for caregivers).


This purpose of the study is to provide a “first-of-its-kind” national snapshot of rare disease caregivers and identify both the unique barriers they face and potential solutions to support them. The study will collect insight from the friends, neighbors, and family who are providing unpaid care to someone with a rare disease, condition, or disorder. In many communities, the volunteers who provide care are called “family caregivers.” The study will identify their needs, similar to other national studies on caregiving such as Caregiving in the U.S. 2015 (www.caregiving.org/caregiving2015), conducted by the Alliance and AARP.
RDR: How will the information from the survey be used in the future?
Whiting: The information from the survey will be aggregated and compiled for a national report. We plan to release the study in a briefing on Capitol Hill during Rare Disease Week in February 2018. In addition to sharing the report with members of Congress, the study will go to federal agencies, health care providers and insurers, and others who create programs and services for caregivers. Findings will also be presented at national conferences on caregiving and rare disease. We hope that the study will help move the national conversation on care and support for rare disease families, and provide greater awareness of how rare disease impacts communities. 
RDR: What type of questions are in the survey and how long does it take to complete?
Whiting: The survey takes between 15 – 20 minutes to complete and is mostly multiple-choice questions, although there are a couple of open-ended responses.

The survey has a variety of questions aimed at collecting the following information: demographic data on the caregiver and care recipient (e.g., age, gender, ethnicity); condition requiring care; average number of hours spent supporting someone with a rare disease and caregiving tasks such as Activities of Daily Living, Instrumental Activities of Daily Living, or medical/nursing tasks; impact of caregiving on the caregiver’s work or school; length of time to diagnosis; misdiagnosis; access to treatment or therapies; participation (or lack of participation) in a clinical trial; access (or lack of access) to specialized clinicians; training (or lack of) from a healthcare provider on caregiving; helpfulness of existing supports; and helpfulness of existing public policy solutions. 
RDR: Is the information confidential?
Whiting: Absolutely, although families may opt-in to participate in future research or to receive the study results. 
RDR: What type of assistance programs and/or educational material are available to help caregivers?
Whiting: Global Genes offers resources for people living with rare disease and their families, especially their toolkits which offer advice and resources for families, here:  https://globalgenes.org/toolkits/.

Many caregivers may not realize that they may also be eligible for services under the National Family Caregiver Support programs  which provides support for family members caring for older adults and older adults who are caring for people with disabilities (such as grandparents or other relatives). Patient groups may also have specialized support networks which can help people who are providing care to navigate the care system and to connect with others.

In general, though, not enough is being done to support families and not enough attention has been given to the caregivers in the rare disease space — something we hope this study will able to start to change. 

RDR: How can people get more involved?
Whiting: We invite you and the family caregivers in your network to participate in this important work. Findings will be aggregated and shared in a report to Congress next February. The report will include solutions to help rare disease families that can be used by policymakers, health insurers, health care providers, and others.

Some basics about the survey:

  • Any adult caregiver who has supported a child or adult with a rare disease in the last year can participate.
  • The survey is anonymous and responses will only be used for the purposes of this research (no individual information will be shared and the data will not be sold).
  • The survey takes about 20 minutes to complete and respondents can opt-in to participate in future research.
  • Where we can gather 100+ responses from caregivers representing a particular disease or community, we can highlight the caregiving needs of that specific community.
  • The final study and the data set will be made available to the public free of charge for future research.

The survey is open until October 31 at www.caregiving.org/rare

Read more

Leave A Comment

Your email address will not be published. Required fields are marked *