Patrick Kinna MBE - September 5th 1913 - March 14th 2009 Tony Jellings, former NPDG (UK) Trustee and Board member, tells us how Patrick Kinna, MBE, who passed away on March 14th 2009, became involved with the Group and offered his support over many years.
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Hope for Hollie Following on from this in November 2007 the Milton Keynes Citizen became aware of another little boy in Milton Keynes, two year old Joshua Cullip, who had also astonishingly been diagnosed with Niemann Pick Type C. The devastating diagnosis given to both families has drawn both them and Hollie and Joshua together in friendship and they are now working jointly on this campaign, which is fully recognised and supported by the Niemann Pick Disease Group (UK). ...Click here to read about their progress so far in the latest ‘Hope for Hollie’ Newsletter |
Campaign for Calum
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Would you like to support the work of the NPDG (UK)? Raising funds for the NPDG (UK) has never been so easy! You can now create your own personalised fundraising page at www.justgiving.com , shop on line and raise funds at the same time with www.easyfundraising.org.uk or even raise funds when you surf the internet using www.easysearch.org.uk |
Excellent new resource for NPC families from Dr Marc Patterson and the Mayo Clinic To view Dr Patterson’s podcast, please click here.
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World Rare Disease Day will take place on 28th February 2009. The day aims to raise awareness of rare diseases with policy makers and the public, to emphasize the impact they have on patients’ lives, it will highlight the need to make rare diseases a public health priority and underline the importance of having designated Centres of Expertise. Other main objectives of Rare Disease Day are to: strengthen one voice of patients; give hope and information to patients; bring stakeholders closer together; co-ordinate policy actions in different countries; i nspire continued awareness and understanding of rare diseases and get equity in access to care and treatment . Events will take place in all 23 participating countries, including the UK as detailed above. If you would like to read more about Rare Disease Day visit www.rarediseaseday.org . ...To view film about World Rare Disease Day click here.
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In October 2007, following the devastating diagnosis that their 2 year old daughter, Hollie, had Niemann Pick type C, her parents Helen & Pete Carter launched the 
When Emma and Carl Burdon were told that their four year old son, Calum, had Niemann-Pick Type C they decided to start a "Campaign for Calum" to raise funds to support the work of the NPDG (UK) and to raise awareness of this group of diseases. A recent event held at the Lowther Pavilion in Lytham St Anne’s attracted 1000 people and raised over £3000 . 
In this short and informative film, Dr Marc Patterson, a Mayo Clinic paediatric neurologist, discusses Niemann-Pick Disease Type C. This is an excellent new resource for NPC families, as well as for medical and social care professionals involved in caring for an affected individual. 
Niemann-Pick Family Appear on the BBC's "Cash in the Attic" In order to raise money to convert their garage in to a bedroom for their daughter, Susie and John Elliott decided to appear on the BBC's "Cash in the Attic" programme. To read their story click here. |
UK Rare Disease Day 2009 The Genetic Interest Group (GIG), in conjunction with Eurodis, held a celebration of Rare Disease Day 2009 at the House of Commons on Wednesday 25th February 2009. Representatives of the NPDG (UK) were invited to attend this event which was hosted by Dr Evan Harris MP. The event also formally launched Rare Disease UK, the new National Alliance created by GIG for people affected by rare diseases and all who support them. For further information visit www.gig.org.uk or http://raredisease.org.uk/ |
Right Care, Right Deal Coalition - New Campaign Website
Right care, Right deal - a coalition of three of the UK’s largest charities – Help the Aged, Counsel and Care and Carers UK – has launched a new campaign website. Right care, Right deal is the new national campaign aiming to build public awareness and support for the need for brave and innovative solutions for the social care system for older and disabled people, their families and carers. With the Government indicating that social care is an urgent political priority, the campaign will urge the government to renew its vision for the future of social care in England. To coincide with the website launch, the coalition has published a major new report on care and support in England in the 21st century. Entitled ‘It’s Everybody’s Business’, the report underlines the task Ministers face as they prepare a Green Paper on social care, due early next year. Visit the website at www.rightcare.org.uk |