The National Lottery Community Fund
We are delighted that the National Lottery Community Fund is supporting the work carried out by Same but Different. To learn more about the organisation click https://www.tnlcommunityfund.org.uk/wales
Ceridwen Hughes Photography
Ceridwen's inspiration for this project comes from her son, Isaac, who has a rare condition called Moebius Syndrome. Through this project she combines her desire to raise awareness of disability and the impact it has on individuals with her passion for capturing that moment in time that draws the observer in to want to know more. You can find out more about her photography at www.ceridwenhughes.com
Climb has an excellent track record in providing knowledge of over 700 rare Inherited Metabolic Diseases.
This unique charity is a global source of information, knowledge, advice and support for 1000s of families, patients and professionals and continues to be involved in new developments and research in order to improve the lives of those affected by these diseases.
Over the next 3 years Climb is committed to raising the awareness of Inherited Metabolic Diseases worldwide as part of its business strategy.
You can learn more about Climb at http://www.climb.org.uk
Genetic Alliance UK
Genetic Alliance UK is the national charity working to improve the lives of patients and families affected by all types of genetic conditions. We are an alliance of over 180 patient organisations. Our aim is to ensure that high quality services, information delay and support are provided to all. We actively support research and innovation across the field of genetic medicine . We carry out our work through policy and public affairs, research activity and project work.
Two of our projects are Rare Disease UK (RDUK) and SWAN UK (Syndromes Without A Name). RDUK is a campaign initiative for people with rare diseases and all who support them: a stakeholder coalition brought together to work with Government to develop a UK Strategy for Rare Diseases, which was published by the Department of Health in November 2013. SWAN UK is a patient and family support initiative: a UK-wide network providing information and support to families of children without a diagnosis.
Genetic Alliance UK supports the work of the Rare Project, led by Ceridwen Barkley to highlight the needs of those living with rare diseases and to gain a better understanding of the person behind the condition. Through this approach we expect the project to raise awareness of rare diseases and to show the impact of rare conditions on children and their families.
For further information about Genetic Alliance UK, Rare Disease UK or SWAN UK, please visit our website: http://www.geneticalliance.org.uk. Emma Hughes is the Development Officer for Genetic Alliance UK and Rare Disease UK in Wales:
As an international specialty healthcare company dedicated to rare diseases, we are proud to support the raising of awareness of rare disease through collaboration on inspirational initiatives like this one.
We aim to place patient value at the heart of what we do. The inspiring stories that patients and families are sharing in The Rare Project only energise us further to strive to do more for rare disease patients.
If you would like to discuss partnering with us on this project please contact us on firstname.lastname@example.org