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Niemann-Pick Conference 2007

A Golf Day has been organised to support the Campaign for Calum

click here for details  

Laurel Parker (pictured below) scoops the Rayleigh Town Council’s Junior Disabled High Achiever 11-16 years Award click here to read Laurel's story

             Welcome to The Niemann-Pick Disease Group (UK)

        Making a positive difference to the lives of those affected by Niemann-Pick Diseases

 

 

BREAKING NEWS.....

Earlier today we received encouraging news from Genzyme, regarding the Phase 1 trial of rhASM in Niemann-Pick Type B patients that we are delighted to be able to share with you. Genzyme has informed us that the Phase 1 trial of rhASM in Niemann-Pick Type B patients has now been completed; click here to read the full statement from Genzyme.  We are all very excited about this and will of course keep you up to date with developments.

 

For those of you planning to attend our Annual Family Conference, Dr Robert J. Desnick, will be joining us from Mount Sinai to discuss recent Niemann-Pick Types A and B research studies.

If you have any questions or comments regarding this announcement please feel free to contact our Clinical Research Nurse by email Elizabeth.Jacklin@cmft.nhs.uk , Jackie Imrie, our Clinical Nurse Specialist, can also be contacted for advice by telephone 0161 922 2414 or email Jacqueline.Imrie@cmft.nhs.uk .  Alternatively, if you would like further information about our Conference, contact the Central Office on 0191 415 0693, or email niemann-pick@zetnet.co.uk

NIEMANN-PICK NEWS SPRING 2009

NIEMANN-PICK FAMILY NEWS BULLETIN MAY 2009

 

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.

 

 

 

 

 

... Read more

Hope for Hollie Hope for Hollie Campaign 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 “Hope for Hollie” campaign to raise awareness of the disease. They were helped by the Milton Keynes Citizen and BBC Look East.

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


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 .

...Read more

 

 

Would you like to support the work of the NPDG (UK)? just giving etc

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

...Read more

Excellent new resource for NPC families from Dr Marc Patterson and the Mayo Clinic

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.  

To view Dr Patterson’s podcast, please click here.

 

World Rare Disease Day

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.

   

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

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