Resources
FOR INFORMATION AND SUPPORT

We partner with advocacy groups to advance a common mission to improve the lives of people affected by rare genetic diseases of obesity. As these independent organizations are closest to understanding the unique impacts of living with these rare diseases, they are uniquely suited to most effectively address these needs. Working together, we strive to help support their vital work, and provide education and resources to the rare genetic diseases of obesity community.

Below is a list of organizations that may offer support. If you are a member of an advocacy group that is not currently included here and would like to be, please reach out to us at [email protected].

white-placemarker

International groups

Alström syndrome Rare diseases Bardet-Biedl syndrome
red-placemarker

US-based groups

Additional resources

Caregiver Action Network (CAN) – CAN, formerly known as the National Family Caregivers Association, provides education, support, and resources to family caregivers across the country, free of charge. Serving as the nation’s leading family caregiver organization, they offer valuable resources such as a guide for family caregivers of loved ones with rare diseases and a Family Caregiver Toolbox.
National Alliance for Caregiving (NAC) – A non-profit group dedicated to improving quality of life for friend/family caregivers and those in their care through research, advocacy, and innovation. In partnership with Global Genes, NAC published Rare Disease Caregiving in America, a national research study capturing the personal experiences of more than 1,400 family caregivers nationwide.
  • Read the study report here
  • Visit the NAC Rare Disease section here
Please note there are currently no advocacy groups for proopiomelanocortin deficiency and leptin receptor deficiency, but Rhythm is dedicated to providing education and support in the absence of any advocacy groups. If you’re interested in updates, please stay connected through our email list and Facebook page.
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A private community

We invite you to join LEAD for Rare Obesity’s private Facebook community, a place to connect with others, share experiences, and ask questions. This is a closed group only open for individuals, friends, and family affected by rare genetic diseases of obesity.

Join the Conversation
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