Collaborators

Revolutionizing rare disease care by creating communities of patients, caregivers, health care providers, researchers & supporters, that work together to transform the lives of those living with rare disease.The Rare Disease Foundation is focused on linking basic science and clinical practice to increase the efficiency of rare disease research. This model is called Translational Care. This model drives patient based, treatment focussed research projects from disease characterization to treatment with greater efficiency. By incorporating research, astute clinician observation and patient and family knowledge into the various stages of rare disease research we impact the speed of discovery and the way rare conditions are managed.


aPODD Foundation is a UK-based non-profit organisation devoted to the development of better treatments for children with cancer.The charity is a unique blend of parents, paediatric oncologists, drug development and regulatory industry experts, working together in collaboration with leading academic centres and technology providers. aPODD is currently focused on drug repurposing projects and advocacy efforts to facilitate the inclusion of adolescents into adult cancer trials.

 


cLTD UK
It is a company formed and incorporated in the United Kingdom (England) dedicated to the field of import, marketing and post-sale maintenance services of specialized medical equipment of high-end in the field of medicine. (Specialties: Cardiology, Neurology, Surgery, Pulmonology, Oncology, Dentistry among others). With offices in Peru and an international presence in the USA and England, the mission is to offer high quality products and services to companies in the specialized medical field.

 


Thanks to the vital support on the part of patients affected by Collagen Type VI-related myopathies and their families, in May 2017,  the official birth of the “Collagene VI Italia ONLUS” No Profit Association!

The Association’s objectives are challenging and ambitious: its priorities are to offer support and assistance to both patients and their families, thus enabling them to benefit from an exchange of ideas and from mutual support; moreover, it proposes to represent patients in the Association meetings, promoting an ongoing liaison with the institutions, with a view to safeguarding patients’ health rights. Secondly, the free of charge promotion of information regarding Collagen Type VI-related myopathies is of fundamental importance; this is proposed to be conducted through meetings, printed material, activities aimed at raising awareness of Collagen Type VI-related myopathies, as well as through the organization of cost-free reunions among patients, their families, researchers and doctors. Finally it aims to create a register of all Collagen Type VI patients, which will allow researchers to rapidly contact all patients potentially suitable and eligible for clinical trials and support scientific research to cure Collagen Type VI-related myopathies through fund-raising!

 


Children’s Craniofacial Association is a national, 501(c)3 nonprofit organization, headquartered in Dallas, Texas. Nationally and internationally, CCA addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions. CCA’s mission is to empower and give hope to individuals and families affected by facial differences. CCA envisions a world where all people are accepted for who they are, not how they look.