The Foundation for Women & Girls with Blood Disorders works to ensure all women and girls with blood disorders are correctly diagnosed and optimally managed at every life stage.
Raises awareness and educates key healthcare professionals
Translates and disseminates information and research
Nurtures future healthcare leaders
Fosters collaboration and generates knowledge among core disciplinesDisease Support Organization Last Updated: 11 Mar 2020
The National Urea Cycle Disorders Foundation is the only organization solely dedicated to saving the lives of children and adults with urea cycle disorders and leads the search for a cure. Internationally recognized, NUCDF serves as a lifeline to families and medical professionals around the world seeking life saving information. NUCDF is the driving force stimulating and supporting research for new treatments, improved outcomes, and a Cure. NUCDF efforts include educating UCD patients, families and medical professionals on diagnosis, treatment and management, and providing guidance, resources, information and support to all those affected by urea cycle disorders. The UCD International Patient Registry (www.ucdregistry.org), empowers UCD patients and caregivers to self-report their own unique experiences with UCD and compare them to others with UCD. Participants in the UCD Registry can help improve the understanding of UCDs, improve care, and accelerate research.Disease Support Organization Last Updated: 30 Jan 2019
Climb is committed to fighting metabolic diseases through research, awareness and support. We are the UK’s only dedicated organisation to provide advice, information and support on all metabolic diseases to children, young adults, families, carers and professionals.Disease Support Organization Last Updated: 10 Dec 2018