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| November 12th:
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The Myrovlytis Trust has joined the recently launched Rare Disease UK - an "alliance of key stakeholders brought together to develop a national plan for rare diseases in the UK".
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| November 5th:
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Some BHD researchers have had difficulty accessing the Nihon Rat (Okimoto et al., PNAS, 2004). The Myrovlytis Trust is delighted to announce that the authors now have permission from the company handling the animals to send them. If you would like access to this animal, please contact Kazuo Okimoto (kazuo-okimoto AT ds-pharma.co.jp) directly. If you do not receive a timely response please let the Trust know and we will ensure that the animals are made available to the BHD research community.
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| November 3rd:
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The Myrovlytis Trust is funding Dr Arnim Pause, at McGill University, to develop Folliculin antibodies. These will be made freely available to BHD researchers prior to publication. The Trust hopes that making sufficient quantities of high quality antibody freely available, will facilitate BHD research.
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| October 13th:
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The abstracts of the talks and posters presented at the Inaugural BHD Symposium have been published on Pubmed and are now available.
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| October 5th:
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The second planning meeting of the European BHD Consortium was held on the 3rd September in Roskilde, Denmark. The next meeting is planned for December 19th in Paris.
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| September 16th:
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The Myrovlytis Trust is delighted to announce the award of a three year grant to Dr Andy Tee of the Institute of Medical Genetics
at Cardiff University. The grant is for 50% of the cost of a PhD studentship to characterise folliculin function from a biochemical perspective.
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| September 15th:
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Professor Terry Cook FMedSci, FRCPath has agreed to join the Scientific Advisory Board of the Myrovlytis Trust. Terry is Professor of Renal Pathology at Imperial College London, UK, and Consultant Renal Pathologist to the West London Renal and Transplant Centre, London, UK. Professor Cook advises several organisations, including the Wellcome Trust, the International Society of Nephrology and the Renal Association. The Trust is delighted the Professor Cook has joined the Board.
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| September 8th:
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The European BHD Consortium has three new members and one new International Affiliate Member: Dr Lennart Friis-Hansen and Dr Thomas van Overeem Hansen, both of the University of Cophenhagen, Denmark, and Dr Silvana Ungari, head of SS Molecula Biology and Genetics Laboratory, Cuneo, Italy, have become members. Professor Ingrid Winship of the University of Melbourne, Australia, has become an International Affiliate Member.
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| September 4th:
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The Inaugural BHD Symposium was held in Roskilde, Denmark, on 3rd September. There were 47 attendees. More details to follow, but initial feedback suggests that the Symposium was well received: we hope it has provided an opportunity for BHD researchers to meet and find out about each other's research as well as stimulating new ideas.
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| August 30th:
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The programme for the Inaugural BHD Symposium is now available.
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| August 20th:
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The Myrovlytis Trust held a two-day meeting on 18th-19th August at the Royal Institution in London. The small, closed meeting was attended by several of the world's leading renal gene therapists and aimed to identify current barriers to progress in renal gene therapy and how to overcome them.
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| August 11th:
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Professor Dian Donnai CBE has agreed to join the Scientific Advisory Board of the Myrovlytis Trust. Professor Donnai is Professor of Medical Genetics at the University of Manchester, UK, Clinical Head of Division of St Mary s Hospital and Consultant in the North West Regional Genetics Service. Professor Donnai has expertise in childhood syndromes involving structural malformations and learning disability. Professor Donnai has been Consultant Adviser in Genetics to the Chief Medical Officer for England, has served on the UK Government Genetics and Insurance Committee, and is President Elect of the European Society for Human Genetics. The Trust is delighted that Professor Donnai has joined the Board.
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| July 11th:
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Two recent articles introduce the Trust to a wider audience. The first is in the Genetic Interest Group summer newsletter - the entire newsletter is downloadable from this page. The second is in OrphaNews Europe, the EU Rare Diseases Task Force newsletter.
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| July 7th:
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Professor Andrew Hopkins D.Phil. FRCS has agreed to join the Scientific Advisory Board of the Myrovlytis Trust. Andrew is Professor of Medicinal Informatics, Biological Chemistry and Drug Discovery Division, at the University of Dundee, and also holds the Scottish Universities Life Science Alliance Chair for Translational Biology. His expertise is in drug discovery having spent several years at Pfizer, most recently as Head of Chemical Genomics, Associate Research Fellow. Professor Hopkins currently consults or advises for several organisations, including the World Health Organisation, OECD, and St Jude Children’s Research Hospital, Memphis, Tennessee. The Trust is delighted that Professor Hopkins has joined the Board.
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| June 3rd:
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The Research Evaluation Procedure of the Trust is now publicly available. It can be downloaded from the About Us page.
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| June 3rd:
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Dr Arnim Pause at McGill University has kindly offered to make an unpublished FLCN+/- mouse line available to the BHD research community, for research that does not duplicate work in his lab.
The line was developed using a gene-trap vector inserted into Flcn (RRX115 from Bay Genomics). For more details of the line please contact Dr Pause.
If you are interested in obtaining the line, or have any questions, please contact Dr Pause and the Myrovlytis Trust. The Myrovlytis Trust will seriously consider meeting mouse transport and storage costs: please do not be put off requesting the line for financial reasons.
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| May 28th:
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The Myrovlytis Trust is delighted to announce that it has awarded a grant to Professor Sir Tom Blundell, Department of Biochemistry, Cambridge University, to carry out a structural biological analysis of folliculin, aiming to study both its architecture and interactions. The grant; is for 16 months in the first instance; will fund a post-doc to carry out experiments building on an initial bioinformatics analysis; will look at folliculin alone and with binding partners.
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| May 21st:
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A report of the first meeting of the Scientific Advisory Board can be downloaded as a PDF from the About Us page.
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| May 21st:
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The Scientific Strategy of the Trust is now publically available. It can be downloaded as a PDF from the About Us page.
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| May 14th:
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Dr Maurice van Steensel MD PhD has agreed to join the Scientific Advisory Board of the Myrovlytis Trust. Dr van Steensel is a dermatologist at Maastricht University Center for Molecular Dermatology, University Hospital Maastricht, The Netherlands, who works on congenital dermatological disorders. He has described several novel mutations in the gene responsible for BHD syndrome. The Trust is delighted that Dr van Steensel has joined the Board.
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| May 13th:
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The Myrovlytis Trust is delighted to announce the award of a two year research grant to Tim Cash, a graduate student in Professor Celeste Simon’s lab at the Abramson Institute, University of Pennsylvania. This grant will support studies into cell signaling pathways in BHD syndrome and the role of folliculin in development, including some mouse work. Grant recipient Tim Cash welcomed the news: “This is wonderful news. This grant will enable me to carry out further experiments to extend my exciting initial findings related to the molecular mechanisms of BHD syndrome.”
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| May 2nd:
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The Myrovlytis Trust is delighted to announce the formation of its Scientific Advisory Board. The Board will be comprised, initially, of Eamonn Maher MD FRCP FMedSci, Professor of Medical Genetics at Birmingham University, UK, and Laura Schmidt PhD, staff scientist at the National Cancer Institute-Frederick, NIH, USA. The Board will "advise the Trust regarding its scientific direction and focus".
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| April 11th:
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Call for abstracts is now open for the Inaugural BHD Symposium. Please go here to register for the meeting and find out how to submit an abstract for poster/oral presentation.
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| April 4th:
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The European BHD Consortium (EBC) website is now live. The EBC aims to promote research into, and treatment of, BHD syndrome.
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| March 18th:
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Registration is now open for the Inaugural BHD Symposium, to be held on 3rd September in Roskilde, Denmark. Organised in partnership with BHD Family Alliance, the Symposium is just one day before the 8th International Medical Symposium on VHL. There will be a laboratory research session in the morning and a clinical session in the afternoon, with a keynote presentation and opportunity for a number of short talks in each session. Register here.
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| February 25th:
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The first planning meeting of the European BHD Consortium (EBC) was held in Amsterdam on 22nd February. The EBC aims to promote research into and treatment of BHD syndrome.
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| February 15th:
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The Inaugural BHD Symposium will be held in Roskilde, Denmark, on the 3rd September 2008. Details to follow.
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| January 17th:
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The Myrovlytis Trust has teamed up with the Birt Hogg Dube Family Alliance to develop a comprehensive website about BHD syndrome. Both partners hope that the website will be the first point of reference for anyone interested in BHD syndrome - families, researchers, clinicians etc. The Alliance’s Cathy Sherman welcomed the plans, saying: "The Trust and the Alliance share the goals of promoting knowledge and understanding of the BHD syndrome; I believe that this new website will reflect this and will be a great asset to anyone who is seeking information about Birt Hogg Dube".
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| December 19th:
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The Charity Commission has registered the Myrovlytis Trust as a charity with registered number 1122073.
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| December 15th:
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The Myrovlytis Trust has set up a travel grants scheme. For more details, see the Travel Grants page.
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| November 13th:
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The Myrovlytis Trust is delighted to have awarded a twelve month grant to Professor Maher and Dr Ferenc Mueller at Birmingham University Medical School, UK. This grant will fund preliminary experiments towards creating a zebrafish model of Birt Hogg Dubé syndrome.
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| November 1st:
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The Myrovlytis Trust is delighted to have awarded a three year grant to Professors Maher and Latif at Birmingham University Medical School, UK. It provides three years’ funding for a post-doc and PhD student. Experiments are planned to start in December 2007.
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| October 31st:
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The Myrovlytis Trust has provisionally agreed a three year programme grant, with the possibility of extension, with Professors Maher and Latif at Birmingham University Medical School, UK. This will enable in depth functional analysis of folliculin and associated cell signalling pathways, and further study in model organisms.
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