gastaging.geneticalliance.uk

rdstaging.geneticalliance.uk

Fundraise

http://rdstaging.geneticalliance.uk/fundraise

What is a rare disease? Thank you for thinking about raising money to support Rare Disease UK’s (RDUK) work. There is no science to fundraising anyone can do it and there are endless ways of raising money. It just takes a little imagination, enthusiasm and determination! You can find lots of information about how to fundraise for RDUK in our Fundraising Pack. Or, here are few suggestions:. Take part in a challenge event,. Organise your own event or activity,. Make a collection,. Non-uniform and dress-dow...

rdstaging.geneticalliance.uk

News & Events

http://rdstaging.geneticalliance.uk/news-events

What is a rare disease? Make sure you stay regularly updated with Rare Disease UK by signing up. To receive our fortnightly newsletter. Trampolining with one lung: how I defy my rare disease. Department of Health and its arm’s length bodies provide evidence to APPG inquiry. Confronting Mast Cell Activation Syndrome. MPs hear patients’ views on the implementation of the UK Strategy for Rare Diseases in England. The importance of early diagnosis: living with scleroderma and Raynaud’s phenomenon. Launch of ...

rdstaging.geneticalliance.uk

Information and support

http://rdstaging.geneticalliance.uk/information-and-support

What is a rare disease? Patients tell us that one of the hardest things about having a rare condition is that often their doctor may not have much information about the condition. Many patients want information about how the condition will affect them in the future, what treatments are available and information and support on how best to live with and manage their symptoms. This can be hard to find when there are so few people diagnosed with a condition. How can I find out more about a condition? When tr...

rdstaging.geneticalliance.uk

Join

http://rdstaging.geneticalliance.uk/join

What is a rare disease? Joining Rare Disease UK. Anyone with an interest in rare diseases can support the work of Rare Disease UK (RDUK). This includes patients, family members, patient organisations, clinicians, researchers, academics and industry. It is completely free to join for everyone other than industry. Increase the pressure on governments and policy makers. By joining RDUK you will support our work to campaign for health departments across the UK to implement the UK Strategy for Rare Diseases.

rdstaging.geneticalliance.uk

Undiagnosed genetic conditions and the impact of genome sequencing (2016)

http://rdstaging.geneticalliance.uk/our-work/undiagnosed-genetic-conditions-and-the-impact-of-genome-sequencing-2016

What is a rare disease? Undiagnosed genetic conditions and the impact of genome sequencing (2016). Undiagnosed genetic conditions and the impact of genome sequencing (2016). The report makes recommendations in a number of areas:. Support for diagnosed: Much more support needs to be provided to families who have been diagnosed through genomic studies. Receiving this kind of diagnosis can be confusing, unsettling and an extremely emotional time for families of children with previously undiagnosed condi...

rdstaging.geneticalliance.uk

Confronting Mast Cell Activation Syndrome

http://rdstaging.geneticalliance.uk/news-events/news/confronting-mast-cell-activation-syndrome

What is a rare disease? Confronting Mast Cell Activation Syndrome. Confronting Mast Cell Activation Syndrome. Support our campaign to receive the newsletter. How do I find information about my condition? How do I find a support group? Genetic Alliance UK provides the secretariat for the following parliamentary groups on Rare, Genetic and Undiagnosed Conditions :. Genetic Alliance UK 2016. Rare Disease UK is a campaign of Genetic Alliance UK. Registered company number: 05772999.

rdstaging.geneticalliance.uk

Trampolining with one lung: how I defy my rare disease

http://rdstaging.geneticalliance.uk/news-events/news/trampolining-with-one-lung-how-i-defy-my-rare-disease

What is a rare disease? Trampolining with one lung: how I defy my rare disease. Trampolining with one lung: how I defy my rare disease. I was diagnosed with a rare disease at three months old. After being born premature but seeming like a healthy baby, it was a shock to my parents when I became unwell. With only one working lung, trampolining is difficult; but I have never wanted my illness to stop me doing the things I enjoy, so I do as much as I can and everyone on the team is very supportive. Support ...

rdstaging.geneticalliance.uk

Our Work

http://rdstaging.geneticalliance.uk/our-work

What is a rare disease? Rare Disease UK (RDUK) provides a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK. We seek to bring about lasting change offering better health and quality of life for individuals and families affected by rare diseases. Health departments across the UK to implement the. UK Strategy for Rare Diseases. Rare Disease Day 2016. The Rare Reality (2016).

rdstaging.geneticalliance.uk

Governance and funding

http://rdstaging.geneticalliance.uk/governance-and-funding

What is a rare disease? Rare Disease UK (RDUK) is a campaign run by Genetic Alliance UK, a charity registered in England and Wales (no. 1114195) and in Scotland (no. SC039299). A company Limited by Guarantee (Number 05772999), Genetic Alliance UK's Annual Report and Accounts can be viewed here. Genetic Alliance UK meets the strict governance rules set out by the Charity Commission. More information can be found via t he Charity Commission website. Rare Disease UK is managed by Genetic Alliance UK. And mo...

rdstaging.geneticalliance.uk

MPs hear patients’ views on the implementation of the UK Strategy for Rare Diseases in England

http://rdstaging.geneticalliance.uk/news-events/news/mps-hear-patients-views-on-the-implementation-of-the-uk-strategy-for-rare-diseases-in-england

What is a rare disease? MPs hear patients’ views on the implementation of the UK Strategy for Rare Diseases in England. MPs hear patients’ views on the implementation of the UK Strategy for Rare Diseases in England. The four countries of the UK have until 2020 to implement the commitments outlined in the Strategy. On Tuesday 1 November, patients, families, carers and patient representatives met with members of the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions. Attendees...