The Buzz Blog - Research News


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BioMarin Pharmaceutical Inc. announced on the 12th of January interim results from a pivotal study for cerliponase alfa, a recombinant human tripeptidyl peptidase 1 to treat of patients with late infantile CLN2 disease, a form of Batten disease.

The interim data indicates that in all nine of the BMN 190 patients who have been followed for a

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PostedNov18

New Batten Disease Trial Launched

Posted by Bee For Battens in Research News | 0 comments

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BioMarin CLN2 (Late Infantile Trial) begins at the Evelina Children's Hospital London

 

The Evelina Children’s Hospital, Guy’s and St Thomas’ NHS Foundation Trust, London has begun recruiting subjects with late infantile CLN2 disease, a form of Batten disease, for a clinical trial.  The trial will examine

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PostedFeb27

2 Year US Research Project Launched.

Posted by Tony Heffernan in Research News | 0 comments

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Bee For Battens is pleased to announce that it has entered into a two year project with Dr Steven Gray of The Gene Therapy Centre of the University of North Carolina , one of the United States Leading Gene Therapy Lads.

The Project which was sanctioned on Jan 18th 2011, the 2nd Anniversary of Batten Disease sufferer Saoirse Heffernan, who di

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PostedFeb01

Get Your Views Heard, Dublin May 13th

Posted by Bee For Battens in Research News | 0 comments

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Get Your Views Heard - Recruiting now!

New medicines: How should we weigh the risks and benefits? And who should do so?

 

As part of a European research study, Genetic Alliance UK and the Welsh Institute for Health and Social Care (at the University of Glamorgan, UK) want to understand how individuals

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PostedJan26

BioMarin Making Big Steps in Batten Disease

Posted by Bee For Battens in Research News | 0 comments

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BioMarin seeks to test enzyme-replacement therapy in Batten Disease patients

 

BioMarin Pharmaceutical Inc. doesn't back down from a tough rare disease.

The Novato company (NASDAQ: BMRN), which made its name with enzyme-replacement therapies that tackle virtually unpronounceable orphan diseases like phenylket

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PostedSep26

Scientists Identify Drugs for Batten Disease

Posted by Bee for Battens in Research News | 0 comments

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Some fantastic news for Batten Disease, it may not work for every child, but who knows!

 http://www.24-7pressrelease.com/press-release/scientists-identify-drugs-for-batten-disease-304304.php

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PostedFeb03

Update on 2012 Research Call

Posted by Bee For Battens in Research News | 0 comments

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In Follow Up to Our 2012 Call for Research Proposals into Batten Disease, please find below a link to a clarification document from the HRB.

 

HRB Clarification Letter Re Overheads  also note:

 

To find out about our call click here

 

regarding our contact details for the submissions; please note

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PostedNov22

2012 Call For Research Funding Proposals

Posted by Bee For Battens in Research News | 0 comments

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Bee For Battens, The Saoirse Foundation is the Irish National Charity For Batten Disease.

It supports those directly affected by the disease, their familes whilst providing advice , information and support to medical professionals, carers and community agencies. Formed in March 2010, the charity is  proactive in Ireland and abroad and i

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PostedAug29

First Steps Into Research Announced.

Posted by Bee For Battens in Research News | 0 comments

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Bee For Battens is pleased to announce that it is taking its first steps into the field of Batten Disease research, entering into  a project partnership with our USA based affiliated charity; The Batten Disease Support & Research Association .

The two projects will take place in different research institutes in the United State

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PostedJul29

EUCERD 2011 report on Rare Disease Activities

Posted by Bee For Battens in Research News | 0 comments

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The Scientific Secretariat of the European Union Committee of Experts on Rare Diseases issued the publication of the "2011 Report on the State of the Art of Rare Diseases Activities in Europe".  This report covers activities up to the end of 2010. 

The report is composed of 3 parts which are now available via the EUCERD

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PostedMay01

Juvenille NCL / Battens Disease News

Posted by Bee For Battens in Research News | 0 comments

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21. April 2011

 

FRANKFURT, Germany. It is a rare disease with devastating consequences: Around first grade, the children start experiencing vision impairments, which two to three years later progress to complete blindness. This is the first indication of a progressive destruction of brain cells. Later on, the patients experience ha

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Scots scientists have helped to unlock a secret of the brain that could lead to drug treatments for millions of people living with conditions such as Alzheimer’s Disease and autism.

Scientists from Edinburgh University and the Wellcome Trust Sanger Institute in Hinxton, Cambridgeshire, discovered a collection of 1461 proteins that acco

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PostedDec10

Medical Research Charities Group

Posted by Bee For Battens in Research News | 0 comments

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Bee For Battens is delighted to be part of the Medical Research Charities Group, Our Charity joined the group in late 2010 and is commited to pushing for more research into Battens Disease and other Rare Diseases.

We will proactively push to give Rare Diseases a larger voice and the Medical Research Charities Group is an idela platform.


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PostedDec09

New Research Partner Bon Secours!

Posted by Bee For Battens in Research News | 0 comments

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Bee For Battens are delighted to announce that we have received funding from Bon Secours Hospital to support some research into Battens Disease in 2011. We are delighted to be approached by such a well respected medical organisation such as Bon Secours and look forward to working very closely with them over the coming years.

 

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