The National Down Syndrome Society (NDSS), in partnership with LuMind IDSC, invites you to participate in the Challenges of Caregiving survey 

The online survey was developed by Eric Rubenstein, Ph.D, an Assistant Professor of Epidemiology at Boston University School of Public Health, as a way to help those working in the field of Down syndrome research better understand the issues that are most important to caregivers.  

Some important things for you to know: 

·         This survey is specifically for caregivers of adults (age 18+) with Down syndrome. 

·         The survey is fully digital and should take approximately 25 minutes to complete. 

·         The survey can be completed on your own desktop, laptop, tablet, or smartphone. 

·         At no time will the researcher or anyone associated with the survey know your identity. 

The results of this survey will be published and shared with you in the coming months.  It is our hope that this information will help inform future research studies, clinical trials, and other avenues of research that could help advance diagnostic, medical care, educational, and technological solutions for caregivers and their loved ones. 

This is one of many steps toward a better future for people with Down syndrome, and we thank you for taking it with us!


Caregiver Newsletter

News and articles of special interest to family caregivers.

Our caregiver newsletter is published several times a year and contains articles and resources of particular interest to family caregivers.

Articles cover a range of topics and issues that families need up-to-date information on such as research, managing care, resources, and much more.  NTG and NDSS partner to bring you newsletters on caregiving. Stay up-to-date below!


Volume 4

Caregiver News Issue 1

Caregiver News Issue 2

Caregiver News Issue 3

Caregiver News Issue 4


More Resources:

  1. The National Alliance for Caregiving has created a new guidebook for caregivers of children with rare and/or serious illnesses. The Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illnesses is a comprehensive resource of supports, services and information that will help caregivers on their caregiving journey.