Charities

Genetic Disorders UK

Genetic Disorders UK is a registered charity with a vision to improve the lives of individuals and families affected by genetic disorders.

Genetic Alliance UK

GAUK aims to improve the lives of people affected by genetic conditions by ensuring that high quality services and information are available to all who need them.

Syndromes Without A Name (SWAN)

SWAN UK is a project run by Genetic Alliance UK offering support and information to parents of children with undiagnosed genetic conditions.

Rare Disease UK

Rare Disease UK (RDUK) is the national alliance for people with rare diseases and all who support them. We believe that everyone living with a rare disease should be able to receive high quality services, treatment and support.

National Organization for Rare Disorders

Every day in America, 30 million people wake up to fight the battle with a rare disease. The vast majority are children. For most, there are no cures and few, if any, proven and effective treatments.  NORD provides a unified voice for those courageous individuals, and the parents and other caregivers seeking to help them, so that they won’t have to fight that battle alone.

Genetic Alliance

Genetic Alliance is one of the world’s leading nonprofit health advocacy organizations. We engage individuals, families, and communities to transform health. Trying to find information and interventions for disease, searching for health information, and/or trying to find ways to participate in research is difficult.  We create ways to make it easier to find or build solutions in health services and research.

Global Genes

Global Genes™  is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009 , with just a few rare disease parent advocates and foundations , has since grown to over 500 global organizations.

 

Social organisations

Global Alliance for Genomics and Health

 The Global Alliance for Genomics and Health (Global Alliance) was formed to help accelerate the potential of genomic medicine to advance human health. It brings together over 375 leading institutions working in healthcare, research, disease advocacy, life science, and information technology. The partners in the Global Alliance are working together to create a common framework of harmonized approaches to enable the responsible, voluntary, and secure sharing of genomic and clinical data.

Personal Genome Project

The Personal Genome Project was founded in 2005 and is dedicated to creating public genome, health, and trait data. Sharing data is critical to scientific progress, but has been hampered by traditional research practices—our approach is to invite willing participants to publicly share their personal data for the greater good.

Personal Genetics Education Project

The mission of the Personal Genetics Education Project is to engage in conversations and raise awareness about the benefits and implications of personal genetics. We make that awareness equally accessible across all segments of society regardless of socioeconomic, educational, ethnic, religious, or cultural background. We strive to instil confidence in individuals to ask questions, make informed decisions, and respect the opinions of others.