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LEADing WITH THE COMMUNITY

Patient engagement and advocacy at Rhythm

Your perspectives and needs LEAD the work we do.

No matter how much research we do, we’ll never truly know what it’s like to live with a rare genetic disorder of obesity. That’s where you come in. Your perspectives as people living with these disorders, as caregivers, and as advocates is crucial to helping us understand these disorders and LEAD our efforts. We believe in creating support and services for you, and with you.

L

Listening to your story. Your stories have inspired us to dedicate ourselves to shedding light on rare genetic disorders of obesity. But this is only the beginning. We want to continue to listen and learn from your experience, including:

  • Your diagnostic journey, which may take anywhere from a few months to decades. No journey is the same
  • Your family’s journey and how rare genetic disorders of obesity have impacted your daily life and the lives of your family members
  • Advocacy groups’ goals to address areas of mutual interest, such as disease education and awareness and the many needs of the communities we serve
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Empowering you through education, resources, and social engagements created to meet the needs of those affected. Through our collaborations, we hope to establish a meaningful support network and services for you. We welcome an open dialogue with advocacy organizations, families, and those affected.

A

Advocating together to accomplish mutual goals. We are committed to learning about/from your perspectives and needs and using our research, support, and services to make a positive difference for those living with rare genetic disorders of obesity. We encourage you to learn more about these rare conditions and take the action that’s right for you–whether it’s asking questions of your medical team about the causes of your obesity, seeking a diagnosis through genetic testing, or helping to create awareness and educate others about these disorders. With your help, we can address the challenges of living with genetic disorders of obesity.

D

Driving change in partnership with advocacy groups. We support the important work of independent advocacy groups. We’ll join in their efforts to get people talking about rare genetic disorders of obesity and collaborate on events for the community. Together, we strive to improve the lives of those affected.

Advocacy groups

We support the vital work of advocacy groups and their dedication to making sure people with rare genetic disorders of obesity receive the care, education, and financial assistance they may need.

Find links to the organizations below, organized by country.

These organizations are an incomplete listing of rare disease support organizations and are not controlled by, endorsed by, or affiliated with Rhythm Pharmaceuticals. The list is meant for informational purposes only and is not intended to replace your healthcare professional’s medical advice.

If you are part of an advocacy group that is not currently represented on this page, you can reach out to LEADforRareObesity@rhythmtx.com to request that your group be added.


International groups


US-based groups


UK-based groups

Rare Diseases

Findacure

Genetic Disorders UK

Alström syndrome

Alström Syndrome UK

Bardet-Biedl syndrome

Bardet-Biedl Syndrome UK

Prader-Willi syndrome

Foundation for Prader-Willi Research UK


Additional resources

The Mighty – This digital health community was created to empower and connect people facing health challenges and disabilities. It has over 1 million registered users and adds a new one every 20 seconds. Visit their Rare Disease section here.

Please note there are currently no advocacy groups for POMC deficiency and LEPR 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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