RareConnect Platform for Urea Cycle Disorders

RARECONNECT1

RareConnect is a safe, easy to use platform where rare disease patients, families and patient organisations can develop online communities and conversations across continents and languages. RareConnect partners with the world’s leading rare disease patient groups to enable families and patients to join discussions, share stories and knowledge, ask questions, meet others, and access resources.

Climb is a patient support group whose mission is to raise awareness and provide bespoke support to families, patients and professionals to improve the lives of those affected by Inherited Metabolic Diseases. Climb supports both children and adults and has vast experience and knowledge of the Urea Cycle Disorders.

These two organisations have joined forces to offer families the wonderful opportunity to securely connect with others affected by any of the Urea Cycle Disorders. This community will be patient-led and moderated by families who have experience of living with these conditions. The platform is free to participate in and you can sign up easily at www.rareconnect.org. oliviarareconnect