Global Genes Foundation Alliance is an organization who advocates, partners and collaborators who are relentless in our efforts to affect change. They do this to eliminate the daily challenges for 1 in 10 people affected by rare disease. They empower patients, build communities & drive forward momentum for rare disease globally. Global Genes’ mission is to connect, empower and inspire the rare disease community. They envision a globally connected community equipped to eliminate the challenges of rare disease.
COMBINEDBrain (Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders) is a consortium led by patient advocacy foundations, working with the clinicians, researchers and pharmaceutical firms that are developing treatments for the disorders they represent. They are devoted to speeding the path to clinical treatments for people with severe rare genetic non-verbal neurodevelopmental disorders by pooling efforts, studies and data.
National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
At Rx4good, they help you deliver on the promise to put patients first. They work with you to thoughtfully integrate the patient perspective into your work, culture, processes, business decisions, and program activities, with the aims of improving patient outcomes and supporting your business goals.