Contact

How we can help 

1. Genetic Alliance UK produces accessible resources called Rare Resources for those affected by genetic, rare and undiagnosed conditions and the people close to them to help explain the impact of the condition, what to expect when it comes to care and where they can find support. 
2. We signpost individuals affected by genetic, rare and undiagnosed conditions to appropriate support organisations and networks. For further information about genetic and rare conditions and where to find resources on our website visit our A-Z of genetic and rare conditions. To get advice on a single condition, look at our A-Z list of member organisations to see if we work with an organisation focused on the condition.
3. We provide information on various topics for people with genetic, rare and undiagnosed conditions including genetic testing and services, insurance and genetic conditions, screening for genetic and/or rare conditions and information on genes and genomics. 
4. Genetic Alliance UK leads SWAN UK (Syndromes Without A Name), the only UK support community for families with children who have a genetic condition so rare that it does not yet have a name.
5. We campaign on a national level for timely diagnosis, better coordinated care, and improved screening, testing, services and treatment. Genetic Alliance UK amplifies the voices of the genetic, rare and undiagnosed community with the NHS, policy-makers, researchers, parliamentarians and the government. 

How we cannot help

1. We do not provide genetic testing. Genetic Alliance UK gives information on how to access genetic testing and guidance on securing the right genetic testing for individuals. However, we do not have laboratory or clinical facilities and do not provide genetic testing services. 
2. We do not provide medical advice on diagnosis, care and treatment. Our team does not receive medical training and we can’t provide opinion or judgement on diagnosis, care plans or treatment. We signpost questions about care to appropriate organisations or explain how to approach this issue in the NHS. Please speak to a clinician/healthcare professional for medical advice.
3. We do not provide individual advocacy. Genetic Alliance UK do not act as advocates for individuals. We cannot attend appointments or speak to health professionals on behalf of individuals. We do, however, work to address systemic challenges via our national campaigning and research.  
4. We do not provide a crisis support service. If you’re struggling and need to talk, at any time of day or night, there are free listening services available. Please find more information about crisis support services on our website.You can also get help to navigate some of the more common emotional challenges that are often shared across rare, genetic and undiagnosed conditions by visiting Rareminds Wellbeing Hub.
5. We only cover the UK. We are an alliance of over 200 charities and support groups working to improve the lives of people in the UK with genetic, rare and undiagnosed conditions. 

Other sources of support and information 

Money and finance

Disability Grants help you to find the right grant 

MoneyHelper gives clear, free, impartial help on money and pensions. 

Family Fund are the UK’s largest grant-making charity for families raising a disabled or seriously ill child on a low income. 

Social care support – Contact 

Contact’s Services and Support guide has information about social care. Visit Contact’s Needs Assessments or Carer’s Assessments webpages to download template letters that you can use to request an assessment. 

Refugee / asylum seeker support

Gov.uk has information for asylum seekers requiring support with mental or physical health 

The Refugee Council has lots of advice and support for refugees and asylum seekers. They also have information on how refugees and asylum seekers can access healthcare.