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 disorders of obesity. As these independent organizations are closest to understanding the unique impacts of living with these rare disorders, 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 disorders of obesity community.
Below is a list of organizations that may offer support, organized by country. 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 LEADforRareObesity@rhythmtx.com.
International groups
- Alström syndrome
- Alström Syndrome International
- Prader-Willi syndrome
- International Prader-Willi Syndrome Organisation
US-based groups
- Bardet-Biedl syndrome
- Bardet-Biedl Syndrome Foundation
- Prader-Willi syndrome
- Foundation for Prader-Willi Research
- Prader-Willi Syndrome Association
- Smith-Magenis syndrome
- PRISMS: Parents and Researchers Interested in Smith-Magenis Syndrome
UK-based groups
- Rare diseases
- Findacure
- Genetic Disorders UK
- Alström syndrome
- Alström Syndrome UK
- Bardet-Biedl syndrome
- Bardet-Biedl Syndrome UK
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.
Please note there are currently no advocacy groups for Proopiomelanocortin deficiency (POMC) and Leptin receptor deficiency (LEPR), 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.
