Myrovlytis Trust letter to the Journal of the American Medical Association
April 10, 2013
In December, the Journal of the American Medical Association (JAMA) Clinical Challenge described a case of BHD (Felton and Madan, 2012). In this article, the authors state that there are currently no clinical guidelines regarding the age or frequency at which to … More »
Fifth BHD and Second HLRCC Symposium – abstract and earlybird deadline extension
April 4, 2013
The abstract and early-bird registration deadlines for the Fifth BHD and Second HLRCC Symposium have both been extended to Monday 15th April. Abstract submission guidelines can be found here and abstracts must be submitted by email to e.lesueur@agence-plb.com. Instructions for … More »
Charity Officer vacancy
March 28, 2013
The Myrovlytis Trust currently has a full-time position available for a Charity Officer. The successful candidate will gain experience working in the medical research sector, as well as contributing your ideas at the core of an international research-funding organisation. For … More »
Fifth BHD and Second HLRCC Symposium – update
March 19, 2013
The official poster for the Fifth BHD and Second HLRCC Symposium has been released and can be found here. Please circulate this to any friends or colleagues who may be interested in attending. The schedule for the conference has been … More »
Scientific Advisory Board Update
March 18, 2013
We are delighted to announce that Professor Arnim Pause PhD has agreed to join the Scientific Advisory Board. Professor Pause is an Associate Professor in the Department of Biochemistry and Canada Research Chair in Molecular Oncology at McGill University, Canada. Professor Pause’s research … More »
5th BHD and 2nd HLRCC Symposium – registration and abstract submission open
February 8, 2013
Registration is now open for the Fifth BHD and Second HLRCC Symposium, to be held in Paris on 28th-29th June 2013. Click here to register. More details on the symposium, including registration, abstract submission, accommodation, and travel can be found … More »
Fifth BHD Symposium, Paris, 28th-29th June 2013
January 11, 2013
We are delighted to announce that the Fifth BHD Symposium will be hosted by Professor Stéphane Richard at the École du Louvre, Paris, on 28th-29th June 2013. We would be delighted to see as many people there as possible. More … More »
Living with BHD radio interview
January 11, 2013
This week’s Powerful Patient radio talk show features an interview with Jean, who has been diagnosed with BHD. Jean shares her experiences with the disease including the difficulty she had getting a diagnosis and how she manages her health now. … More »
New Research Funding
November 5, 2012
We are delighted to announce a grant award: Dr Stephen Land of the University of Dundee has been awarded a one year research grant to create a tissue bank of nasal epithelial cells taken from BHD patients and healthy donors, … More »
New Member of Staff
November 5, 2012
Having completed a Post-Doc investigating the genetic susceptibility of Wilms Tumor at the Institute of Cancer Research, Lizzie Perdeaux has recently joined the Myrovlytis Trust as a charity officer.
Communications and Administration Officer vacancy
July 31, 2012
The Myrovlytis Trust currently has a full-time position available for a Communications and Administration Officer. The successful candidate will have a key role in enabling the growth of the Trust by managing communications and providing daily administrative support. For the right … More »
Fourth BHD Symposium abstracts available
July 5, 2012
Abstracts from the Fourth BHD Symposium are now available, published in the journal Familial Cancer.
Internship opportunities
April 25, 2012
The Myrovlytis Trust currently has three part-time internship positions available for nine weeks in July and August 2012. Successful candidates will have an independent project to complete based on analysing research into a rare genetic kidney disorder. The internships will suit … More »
New member for Scientific Advisory Board
April 19, 2012
We are pleased to announce that Dr Andrew Tee PhD has agreed to join the Scientific Advisory Board. Dr Tee is Research Lecturer at the Institute of Medical Genetics of Cardiff University School of Medicine, UK and an AICR fellow. Dr Tee leads a research group … More »
Agenda available for Fourth BHD Symposium
March 16, 2012
The Fourth BHD Symposium agenda and Patient and family sessions schedule are now available. For more information, visit the Fourth BHD Symposium page. We look forward to seeing many of you in Cincinnati on the 28th March!
World Kidney Day
March 8, 2012
Today is World Kidney Day! Many events are taking place around the globe, from symposia to walks, marches and cycling. Go to World Kidney Day to learn more.
Information Standard certification award
March 7, 2012
We are pleased to announce that the Myrovlytis Trust has been awarded Information Standard certification, to recognise that it is a provider of high quality, safe and reliable health information. The Myrovlytis Trust is now able to place the Information … More »
Abstract deadline, Fourth BHD Symposium
February 13, 2012
The abstract deadline is end of the day Wednesday 15 February. Further information on submission is available here. Do submit soon! We look forward to receiving your abstracts.
PREDIR: centre of expertise for rare renal tumours
February 9, 2012
PREDIR is a French network of centres of expertise established for patients with rare kidney cancer syndromes as well as those requiring specialised care. It is composed of 25 regional centres of expertise. The national centre is based in Paris. … More »
Registration and new details, Fourth BHD Symposium 2012
January 26, 2012
Registration is now open for the Fourth BHD Symposium, to be held in Cincinnati on 28th-30th March 2012. Click here to register. More details on the symposium, including registration, abstract submission, accommodation, and travel can be found on the Fourth BHD Symposium webpage. Additionally, please … More »
Abstract submission, Fourth BHD Symposium 2012
January 10, 2012
Abstract submission for the Fourth BHD Symposium is now open. The Symposium will be held in Cincinnati, USA from 28th-30th March 2012. Abstracts can be submitted here and more information, including instructions for abstract submission and travel grant applications, can be found here. The deadline for abstract … More »
New Research Funding
December 19, 2011
We are delighted to announce a grant award: Miss Laura Pradella of the University of Bologna has been awarded a two-year post-doctoral grant to study the development of oncocytic renal tumours in BHD and Cowden syndrome.
BHD researcher video interviews
November 25, 2011
The interview recently posted with Dr W. Marston Linehan, on BHDSyndrome.org, marks the last in a series of 14 videos showcasing many of the researchers dedicated to understanding and developing a cure for BHD syndrome. Have a look and hear about the work of, for example, a structural biologist, a … More »
Fourth BHD Symposium, Cincinnati, 28th-30th March 2012
November 10, 2011
We are delighted to announce that the Fourth BHD Symposium will take place in Cincinnati on March 28th-30th 2012. The abstract deadline is the 15th February. Registration and abstract submission will be open soon. We will be delighted to see as many people … More »
New Research Funding
November 4, 2011
We are delighted to announce a grant award: Professor Maria Czyzyk-Krzeska of the University of Cincinnati in the United States has received a new grant to investigate the protein networks of Folliculin.
Introducing the BHD Foundation
September 20, 2011
As the Myrovlytis Trust’s work in BHD syndrome has increasingly overlapped with work on related diseases, we have created a new charity to streamline our activities. The BHD Foundation is a registered charity which will oversee all BHD-exclusive projects, allowing … More »
New Research Funding
September 20, 2011
We are delighted to announce a grant award: Dr Douglas Medvetz of Brigham and Women’s Hospital in Boston, United States, has received a new grant to investigate the role of Folliculin in lung and skin tumour formation.
New Research Funding
August 23, 2011
We are delighted to announce a grant award: A new grant has been awarded to Dr Andrew Tee of Cardiff University, UK, to enable identification of possible therapies for BHD.
New Research Funding
August 5, 2011
The Myrovlytis Trust has recently partnered with the Michigan High Throughput Screening Centerto undertake a first-stage drug screening project for BHD syndrome. This project will identify classes of compounds which have the potential to be developed as therapeutics and treat BHD … More »
The Myrovlytis Trust joins the AMRC
July 29, 2011
We are delighted to announce that the Myrovlytis Trust is now a member of the Assocation of Medical Research Charities (AMRC). The AMRC is a membership organisation, established in 1987, of the leading medical and health research charities in the UK. Click here … More »
New Research Funding
June 30, 2011
The Myrovlytis Trust is delighted to have awarded a grant extension to Professor Sir Tom Blundell and Dr Ravi Nookala of the University of Cambridge, UK. The Blundell group will continue to extend their work elucidating the structure and function … More »
Highlights of the Third BHD Symposium
June 10, 2011
Highlights of the Third BHD Symposium are now available on the BHD Research Blog. Read about the scientific sessions and the patient and family programme.
Abstracts for the Third BHD Symposium
April 30, 2011
Abstracts for the Third BHD Symposium are now available online here. The Third BHD Symposium will be held on 11th-12th May 2011, in Maastricht, the Netherlands.
Patient and Family Sessions at Third BHD Symposium
April 20, 2011
We are excited to announce that the Patients and Families programme is now published online here. The BHD programme will take place on 11th May, while the HLRCC programme will be on 12th May. Experts for the informal Q&A sessions will include … More »
Registration Open: Third BHD Symposium, Maastricht, 11th and 12th May, 2011
January 31, 2011
The Third BHD Symposium will be held in Maastricht, the Netherlands, on 11th and 12th May 2011. Registration and abstract submission are now open; links and further details are available here. We are delighted to announce already that Dr. Kuniaki … More »
New Research Funding
January 29, 2011
The Myrovlytis Trust is also delighted to announce a new grant awarded to Dr Rachel Giles at the University Medical Centre, Utrecht, the Netherlands to study the possible effect of PTC124 on FLCN mutations.
The Myrovlytis Trust joins the Cancer Campaigning Group
December 1, 2010
The Myrovlytis Trust is now a member of the Cancer Campaigning Group. Visit cancercampaigninggroup.org.uk to learn more.
Recruitment Opportunities
October 4, 2010
The Myrovlytis Trust is currently recruiting two Charity Officers and one part time Administrator. The successful candidates will work with and support the Charity Manager, to enable the Trust to broaden and deepen its activities. The application deadline for all … More »
Preimplantation Genetic Diagnosis for BHD Syndrome
August 2, 2010
The Myrovlytis Trust and the Genetic Alliance UK have submitted a joint response to the Human Fertilisation and Embryology Authority following the application to use preimplantation genetic diagnosis (PGD) to avoid pregnancies affected by Birt-Hogg-Dubé. The response can be viewed … More »
Research Funding Update
July 28, 2010
The Myrovlytis Trust is delighted to award a grant extension to Dr Richard Harbottle at Imperial College London, UK. The six month extension will support ongoing work into the development of prophylactic gene therapy for BHD Syndrome using non-viral S-MAR … More »
Research Funding Update
June 29, 2010
The Myrovlytis Trust is delighted to award a grant extension to Dr Ravi Nookala and Professor Tom Blundell at Cambridge University, UK. The twelve month extension will support a Masters student and a research assistant to continue the structural biological … More »
Second BHD Symposium Highlights
May 24, 2010
Videos of Dr Laura Schmidt, Dr Berton Zbar, Dr Frank McCormack, and Joyce Graff presenting at the Second BHD Symposium 2010 are now available to view here. The Second BHD Symposium was co-sponsored by the Office of Rare Disease Research … More »
The Trust in the spotlight
February 24, 2010
Some recent activities of the Myrovlytis Trust are published in the winter 2009/2010 newsletter of the Genetics Interest Group, here.
BHD Symposium Abstract Deadline
February 8, 2010
The abstract submission deadline for the second BHD Symposium is Monday 15th February. Interested researchers wishing to present data at the Symposium are encouraged to submit their abstracts. The word limit has been set at 200 words. You can find … More »
Register: Second BHD Symposium
January 13, 2010
Registration is now open for the Second BHD Symposium, to be held in Washington, DC, April 22nd, 2010. The abstract submission deadline for either a poster or an oral presentation is 15th February 2010, the word limit is 200 words. … More »
BHD diagnosis and management guidelines
December 1, 2009
The European BHD Consortium has published ‘Birt Hogg Dube Syndrome: Diagnosis and Management’ guidelines in the Lancet Oncology.
European BHD Consortium Meeting
November 24, 2009
On 16th November in London, the European BHD Consortium held its fourth meeting. Attended by thirty people, the meeting included an excellent presentation by Dr Laura Schmidt. A report of the meeting is available here.
Second BHD Symposium
October 6, 2009
On 22nd April 2010, the Second BHD Symposium will be held in Washington DC. This follows the success of the Inaugural BHD Symposium in September 2008. Further details will be available here.
Research Grant Award
September 15, 2009
The Myrovlytis Trust is delighted to have awarded a grant to Maria Czyzyk-Krzeska , Professor at the Genome Research Institute, University of Cincinnati. The two year grant will fund a post-doc to look at the regulation of FLCN expression by … More »
Renal Gene Therapy Grant Awards
September 1, 2009
The Trust is delighted to announce that it is funding three research projects in renal gene therapy: Dr Yosef Haviv at Hadassah-Hebrew University Medical Centre, Israel, will take an SV40-based kidney gene therapy approach. Dr Haviv’s project will involve developing … More »
BHDSyndrome.org Update
July 8, 2009
Duncan Azzopardi, Charity Officer at the Trust, has recently started writing a blog at www.BHDSyndrome.org. The blog will provide a rolling commentary of BHD research and is also interactive, so that readers can ask questions or provide their thoughts on … More »
Research Grant Award
July 3, 2009
The Myrovlytis Trust is delighted to announce the award of a grant to Dr Vera Krymskaya, Associate Professor at the University of Pennsylvania. The grant, for up to two years, will fund a post-doc to look at the role of … More »
Cambridge University Summer Placement
June 24, 2009
The Myrovlytis Trust are funding an 8 week summer placement within Prof Sir Tom Blundell’s lab at Cambridge University. Cat Donaldson will be participating in ongoing research into the crystal structure of Folliculin. This an important step in helping to … More »
Online Folliculin Mutation Database Established
June 5, 2009
A new FLCN mutation database is available. It was created by Derek Lim (Clinical Research Fellow at Birmingham University, UK) with the European BHD Consortium, and is hosted at LOVD. As well as describing published mutations, the database also describes … More »
New Member of Staff
June 2, 2009
Duncan Azzopardi has joined the Myrovlytis Trust, having just finished his PhD on colon cancer at the Institute of Medical Genetics at Cardiff University. Duncan will support the work of the Trust, including developing www.BHDSyndrome.org as the primary global online … More »
Positions Available
May 12, 2009
Two research positions (one PhD student and one postdoc) will soon be available with Dr Maurice van Steensel, Maastricht University, the Netherlands. The positions are for four years, and will involve working on the basic science of BHD, with possibly … More »
Rare Genetic Disease Pilot Grant Programme
March 3, 2009
The Myrovlytis Trust and US-based non-profit Partnership for Cures have created the Rare Genetic Disease Pilot Grant Programme. This programme aims to bring together researchers and funders to try to produce better treatments for patients with rare genetic diseases. The … More »
Recruitment Opportunity
January 20, 2009
The Myrovlytis Trust is recruiting a Charity Officer. The successful candidate will work with and support the Charity Manager, to enable the Trust to broaden and deepen its activities. Duties will include: Providing administrative support to the Trust; Regular website … More »
European BHD Consortium Report
January 12, 2009
The European BHD Consortium held its third meeting in Paris on 19th December. A report of the meeting, which was attended by a dozen people, is available here.
Research Grant Award
November 13, 2008
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 … More »
Rare Disease UK
November 12, 2008
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”.
BHD Nihon Rat Availability
November 5, 2008
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 … More »
Folliculin Antibody Grant Award
November 3, 2008
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, … More »
Inaugural BHD Symposium Abstracts
October 13, 2008
The abstracts of the talks and posters presented at the Inaugural BHD Symposium have been published on Pubmed and are now available.
Date For Your Diary
October 5, 2008
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.
Grant Award
September 16, 2008
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 … More »
Scientific Advisory Board Update
September 15, 2008
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, … More »
European BHD Consortium Membership Update
September 8, 2008
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 … More »
Symposium Success
September 4, 2008
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 … More »
BHD Symposium Programme
August 30, 2008
The programme for the Inaugural BHD Symposium is now available here.
Myrovlytis Trust Meeting
August 20, 2008
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 … More »
Scientific Advisory Board Membership Update
August 11, 2008
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 … More »
GIG and OrphaNews Europe
July 20, 2008
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 … More »
Scientific Advisory Board Update
July 7, 2008
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 … More »
FLCN+/- Mouse Line Availability
June 3, 2008
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 … More »
Research Evaluation Procedure
June 3, 2008
The Research Evaluation Procedure of the Trust is now publicly available. It can be downloaded from the About Us page.
Research Grant Award
May 28, 2008
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. … More »
Report Availability
May 21, 2008
A report of the first meeting of the Scientific Advisory Board can be downloaded as a PDF from the About Us page. The Scientific Strategy of the Trust is now publically available. It can be downloaded as a PDF from … More »
Scientific Advisory Board Update
May 14, 2008
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 … More »
Research Grant Award
May 13, 2008
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 … More »
Scientific Advisory Board Announcement
May 2, 2008
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 … More »
Call For Abstracts
April 11, 2008
Call for abstracts is now open for the Inaugural BHD Symposium. Please email ‘contact@bhdsyndrome.org’ to register for the meeting and find out how to submit an abstract for poster/oral presentation.
European BHD Consortium
April 4, 2008
The European BHD Consortium (EBC) website is now live. The EBC aims to promote research into, and treatment of, BHD syndrome.
BHD Symposium Registration
March 18, 2008
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 … More »
EBC Meeting
February 25, 2008
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.
Inaugural BHD Symposium News
February 15, 2008
The Inaugural BHD Symposium will be held in Roskilde, Denmark, on the 3rd September 2008. Details to follow.
BHDSyndrome.org News
January 17, 2008
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 … More »
Charity Commission
December 19, 2007
The Charity Commission has registered the Myrovlytis Trust as a charity with registered number 1122073.
Travel Grants
December 15, 2007
The Myrovlytis Trust has set up a travel grants scheme. For more details, see the Grants page.
Research Grant Award
November 1, 2007
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 … More »
Research Grant Award
October 31, 2007
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 … More »
