Rare Disease UK (RDUK) is the national campaign 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.
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Rare Disease UK | rdstaging.geneticalliance.uk Reviews
https://rdstaging.geneticalliance.uk
Rare Disease UK (RDUK) is the national campaign 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.
rdstaging.geneticalliance.uk
Patient Experience Videos
http://rdstaging.geneticalliance.uk/our-work/patient-experience-videos
What is a rare disease? The following videos provide an insight into the lives of people affected by rare diseases and some of the issues they have to face in getting a diagnosis and accessing the care and support they need. Drew has Common Variable Immune Deficiency (CVID). CVID is a condition that impairs the immune system. People with CVID are highly susceptible to infection. The Rare Reality (2016). Rare Disease Day 2016. Experiences of Rare Diseases: An Insight from Patients and Families (2010).
Supporters
http://rdstaging.geneticalliance.uk/supporters
What is a rare disease? Rare Disease UK (RDUK) has over 2,000 registered supporters including academics, clinicians, industry, individual members and patient organisations. For more information and to join RDUK please click here. Our industry supporters for 2016 are: Aegerion, Alexion, Amgen, Amicus Therapeutics, Bio Marin, Biogen, Chiesi, CSL Behring, Genzyme, GlaxoSmithKline, Healx, Novartis, Pfizer, PTC Therapeutics, Raptor, Roche, Shire, Sigma-Tau Rare Disease, SOBI, UCB and Vertex. CDH-UK (Congenita...
Donate
http://rdstaging.geneticalliance.uk/donate
What is a rare disease? Donations support our work. Thank you for thinking about donating to support our work. Approximately 3.5 million people in the UK will be affected by a rare disease at some point in their life. A strong advocacy body is needed to ensure that each health department and health service of the UK meets the needs of all those affected by rare diseases. You can set up a fundraising. Simply fill out our gift aid form. And send it with your cheque. Level 3, Barclay House. How do I find in...
Rare Disease Day 2016
http://rdstaging.geneticalliance.uk/our-work/rare-disease-day-2016
What is a rare disease? Rare Disease Day 2016. Rare Disease Day 2016. This year the day’s central theme was to recognise the crucial role that patient voice plays in creating change and improving the lives of patients, their families and carers. In the Scottish Genomes Partnership, after which Professor Zosia Miedzybrodzka spoke about the Scottish Genomes Project and what it means for rare disease patients. Our Westminster reception was held on Wednesday 2nd March. It was attended by over 150 people,...
UK Strategy for Rare Diseases
http://rdstaging.geneticalliance.uk/uk-strategy-for-rare-diseases
What is a rare disease? UK Strategy for Rare Diseases. UK Strategy for Rare Diseases. The publication of the UK Strategy for Rare Diseases. In 2013, represented a landmark for patients with rare diseases. It is the first time all four health departments of the UK have come together to recognise and respond to the needs of all those affected by rare diseases. The aim of the Strategy is to ‘ensure no one gets left behind just because they have a rare disease’. Key features of the Strategy. Improving diagno...
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swanstaging.geneticalliance.uk
Get Involved
http://swanstaging.geneticalliance.uk/get-involved
Approximately 6,000 children are born in the UK each year with a syndrome without a name a genetic condition so rare that it is often impossible to diagnose. Our Big Ambition here at SWAN UK is that each of these families will have the support they need, when they need it. SWAN UK received a three-year grant from the Big Lottery Fund in 2016 but we still need your help to achieve this ambition. You can set up your own fundraising page, with the money you raise going straight to SWAN UK through. Year we c...
swanstaging.geneticalliance.uk
Join
http://swanstaging.geneticalliance.uk/join
Raising a child affected by a syndrome without a name can be a very isolating experience, by joining SWAN UK you will be able to make contact with other families who understand just how worrying and frustrating it can be. Without a diagnosis there was no place for me in groups/organisations for diagnosed conditions and syndromes. It is important for me to have somewhere where we are all 'in the same boat' even though our Swans have varying needs and difficulties.". 24/7 Support and Information. Membershi...
swanstaging.geneticalliance.uk
Disclaimer
http://swanstaging.geneticalliance.uk/disclaimer
This disclaimer covers all the charity’s activities, including those described as part of the Rare Disease UK and SWAN UK initiatives. There are a number of links from this website to sites maintained by other groups. These links are provided purely to assist you, and in good faith. The presence of a link does not necessarily imply that Genetic Alliance UK endorses or supports those other groups, nor does the absence of a group imply that Genetic Alliance UK does not support it. How do I join SWAN UK?
swanstaging.geneticalliance.uk
Is there any help out there?
http://swanstaging.geneticalliance.uk/news-events/news/is-there-any-help-out-there
Is there any help out there? Is there any help out there? By swan uk member and blogger - theworldofgorgeousgrace.wordpress.com. Of course where are my other kids when this is happening? How to ensure that they know GG loves them and treasures them and in that moment she is not herself. Avenue 1: School Of course GG’s behaviour in school is impeccable, brilliant in fact. That means we don’t get any help with issues at home. Avenue 2: GP Try school. Umm did that. Oh. Avenue 3: The amazing SWAN UK networks...
Finding support for a rare or genetic condition
http://gastaging.geneticalliance.uk/information/living-with-a-genetic-condition/finding-support-for-a-rare-or-genetic-condition
Living with a genetic condition. Living with a genetic condition. Finding support for a rare or genetic condition. Finding support for a rare or genetic condition. How can Genetic Alliance UK help me find support? We are an alliance of 180 patient organisations. Many of which are condition specific UK charities and support groups who exist to support children, families, individuals and carers. They are the experts in understanding their specific conditions and at providing the support that you need.
Report launch Genome editing : the patient perspective
http://gastaging.geneticalliance.uk/news-events/news/report-launch-genome-editing-the-patient-perspective
Report launch Genome editing : the patient perspective. Report launch Genome editing : the patient perspective. Today we publish our new report. Genome editing technologies: the patient perspective. We asked over 150 patients, family members and carers to consider a variety of scenarios in which genome editing. Could be applied and give their perspectives on the ethical use and regulation of genome editing technologies in these situations. What did we find? Patients are interested in genome editing techn...
What is a genetic test?
http://gastaging.geneticalliance.uk/information/services-and-testing/what-is-a-genetic-test
Living with a genetic condition. What is a genetic test? What is a genetic test? A genetic test can help identify if there is a faulty gene or chromosome. That might cause a genetic condition. It is usually a blood or tissue test. There are a number of reasons why a person might take a genetic test. Some of the reasons are listed below:. You or your partner have a child with learning difficulties, developmental delay or health problems. The doctor thinks it might be a genetic condition. There is an incre...
European Reference Networks 101
http://gastaging.geneticalliance.uk/news-events/news/european-reference-networks-101
European Reference Networks 101. European Reference Networks 101. This blog was written by Victoria Hedley who is the RD-ACTION Thematic Coordinator at Newcastle University John Walton Muscular Dystrophy Research Centre. Here she talks about the importance of European Reference Networks to rare disease patients in the UK. What are European Reference Networks? At present, European Reference Networks (ERNs) are well, pending! But not for long. Five years after the publication of the. The guidance for ERNs ...
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Rare Disease UK
What is a rare disease? Campaigning on behalf of all those affected by a rare condition. What is the UK Strategy for Rare Diseases? Where can I find information and support for my condition? How can I support Rare Disease UK? Latest from Rare Disease UK. 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. Funding Support for Rare Disease Research (2013). Rare Disease Day 2016.
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