Members of the press:
NLRP12 is a unique, non-profit organisation based in Edinburgh advocating for, and supporting, patients suffering from the ultra-rare familial cold autoinflammatory syndrome type 2, other rare autoinflammatory diseases and rare diseases in general. We work together with our global partners to improve the lives of the people living with a rare disease, and their families, around the world. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, we aim to strengthen the patient voice to shape research, social policies, policy formation and patient services for complex care pathways.
We are available to online, print and broadcast journalists worldwide to increase the scope of information on rare diseases. Please feel free to contact us.
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Living with a rare disease Byline: Charlotte Young; Photo Credit: Great Ormond Street Hospital Charity
We don’t know what’s going to happen in the future because there isn’t a large enough pool of people with the condition to do a study or have a clinical trial. For now, unless anything urgent happens, we will just keep coming to GOSH to see Professor Brogan and sharing our knowledge of this disease with the world. Living with a rare disease is a constant struggle, but we need to keep talking to each other and sharing information. One day, there might even be a cure.
Great Ormond Street Hospital, 28th February 2017 (Rare Disease Day)
Family appeals for help over rare diseases byline: Tom Peterkin; Photo Credit: Ian Georgeson
“We are now six months into our new parliament and it seems the 300,000-strong rare disease community are being totally forgotten by our politicians, as we are still waiting for a cross-party group on rare diseases to be formed. The politicians are just forgetting about it.”
Scotland on Sunday, 29th November 2016
I am my son’s named person – and I can do it better than anyone byline: John Wallace; Photo Credits: John Wallace Neil Hanna
Families of children with rare diseases represent a motivated group striving to find what is best for their loved one, make the time and find the energy to sift through thousands of pieces of information to find that one pearl, no matter how small. They dedicate their lives to researching their children’s condition. This dedication, in turn, can mean that even as they turn to medical professionals for help, it is those same professionals that in fact look to the parents for guidance.
Third Force News, 13th June 2016
Disabled boy ‘carried’ from school because of parking space row byline: Gina Davidson; Photo Credit: Neil Hanna
Mr. Pearson has defended his decision to park in the bay and to challenge the council’s traffic order.
“My objection to it is solely based on the fact that the council is using the wrong traffic order – it is making it a ‘residential’ bay, in the same way, a disabled person can apply for one outside their own home. That is not a bay where fines can be handed out.” He added: “Yes, I do park in it, but only for short periods of time when I can’t get closer to my house as the street is generally full of teachers’ cars.” Mr. Pearson added: “I will withdraw my objection if the council uses the correct traffic order. Anyone could get some white paint and mark a disabled space on the road.”
Edinburgh Evening News, 1st October 2015
This story was also carried by:
Disabled boy has to be carried into school because charity boss uses blue-badge parking bay as his own personal space – and says he can’t be fined Daily Mail 1st October 2015.
Dad carries disabled son to school every day because charity boss uses only disabled parking space Daily Mirror 1st October 2015.
Dad Regularly Carries Son With Disabilities Into School Because Of Disabled Parking Bay Row Huffington Post 2nd October 2015.
A Father Carries His Handicapped Son to School, This is the City’s Response Patient Worthy 16th October 2015.
Vader moet kind naar school dragen door huftergedrag Metro Nieuws (Nederlands) 1 October 2015.