Kidney Cancer Symposium
March 23, 2021
Registration for the virtual 2021 European International Kidney Cancer Symposium is now open. On the 23rd-24th April 2021 kidney cancer experts, including clinicians and researchers, will come together to share their ideas and discuss current and novel treatments for kidney … More »
One Cancer Voice: Joint statement from 47 UK cancer charities
March 17, 2021
With a substantial backlog of cancer tests and treatments, getting cancer services back to pre-pandemic levels is simply not enough. So we have joined with 46 other cancer charities to call on the UK and Devolved governments to restore and transform cancer services. #OneCancerVoice You can download … More »
World Kidney Day 2021
March 12, 2021
This week we celebrated World Kidney Day, raising awareness of kidney cancer in Birt–Hogg–Dubé syndrome. We are posting on Twitter and Facebook using the #KidneysMatter and #WorldKidneyDay and of course #BHDsyndrome. We are also delighted to announce that we have … More »
UK Rare Disease Framework published
March 2, 2021
The UK Rare Diseases Framework was published in January, highlighting the priorities and underlying strategic themes that detail how the UK will address the challenges faced by those living with rare diseases. The UK Rare Diseases Framework outlines 4 high-level … More »
Vacancy: Charity Research Officer
March 2, 2021
We are looking for a Charity Research Officer to join the Myrovlytis Trust and help us manage and update the scientific literature, research projects, communication with patient groups and assist with organising our annual symposia. This is a varied and … More »
AllTrials campaign
June 15, 2016
The Myrovlytis Trust is pleased to be supporting the AllTrials campaign. We consider that all clinical trials should be registered and results published. We support complete transparency for all data underlying clinical studies particularly in rare disease research where opportunity for study … More »
Papers funded by the Myrovlytis Trust published
January 6, 2016
Last year two papers partially funded by the Myrovlytis Trust were published: Possik et al. find that deleting FLCN in C. elegans leads to increased glycogen accumulation and hyperosmotic stress resistance. A Myrovlytis Trust grant was awarded to Arnim Pause at McGill University in … More »
Sixth BHD Symposium and First International Upstate Kidney Cancer Symposium 2015
October 30, 2015
The Sixth BHD Symposium and First International Upstate Kidney Cancer Symposium was hosted by Dr Mehdi Mollapour and Professor Gennady Bratslavsky at the Upstate Medical University in Syracuse, New York, on 23rd-26th September 2015. We were delighted to see so many researchers, … More »
Charity Officer vacancy
November 10, 2014
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 »
Paper funded by the Myrovlytis Trust published
November 5, 2014
Benusiglio et al. (2014) describe the renal cell carcinoma characteristics of 33 patients with Birt-Hogg-Dubé syndrome. This work was partly funded by the Myrovlytis Trust, through a grant awarded to Professor Stéphane Richard, at the Institute Gustave Roussy in Paris, … More »
The Amsterdam Patient Charter for Global Kidney Cancer Care
October 9, 2014
In September, the International Kidney Cancer Consortium (IKCC) published the Amsterdam Patient Charter for Global Kidney Cancer Care in European Urology (Giles et al., 2014). The charter declares that all kidney cancer patients worldwide have the following rights: Timely investigation … More »
Paper funded by the Myrovlytis Trust published
August 12, 2014
Khabibullin et al. (2014) show that the effect of FLCN deletion is highly cell specific, and that the lungs of mice heterozygous for FLCN show increased elastance and interstitial edema when exposed to increased pulmonary mechanical stress. This work was … More »
Findacure Workshop – How to manage a small rare disease patient group – 12th September 2014
August 1, 2014
Following from their previous three successful workshops training patient advocates how to apply for funding as a small organisation; about European Commission funding for small patient groups; and how to develop clinical trials as a small patient group, Findacure will be … More »
Paper funded by the Myrovlytis Trust published
July 22, 2014
Dunlop et al., (2014) find that FLCN enhances basal autophagic flux through its interaction with the autophagy proteins GABARAP and ULK1. This work was partly funded by the Myrovlytis Trust, through grants awarded to Dr Andy Tee at Cardiff University, … More »
The Cancer in our Genes International Patient Databank
July 10, 2014
The Cancer in our Genes International Patient (CGIP) Databank is a patient registry for Birt-Hogg-Dubé Syndrome (BHD), Von Hippel Lindau Syndrome (VHL), Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) and Succinate Dehydrogenase (SDH) patients. Very little is known about the natural … More »
Trial testing rapamycin as treatment for fibrofolliculomas – results published
June 12, 2014
Earlier this week, the results of a clinical trial testing the effectiveness of topical rapamycin as a treatment for BHD were published in PLOS ONE. The study was performed in Professor Dr Maurice van Steensel’s lab at Maastricht University Medical … More »
Paper funded by the Myrovlytis Trust published
June 2, 2014
Yan et al. (2014) find that FLCN inhibits AMPK by binding to it, which prevents cells from tumorigenic Warburg transformation. This work was partly funded by the Myrovlytis Trust, through grants awarded to Professor Arnim Pause, at McGill University, Montréal, … More »
Paper funded by the Myrovlytis Trust published
April 24, 2014
Possik et al. find that deleting FLCN in C. elegans leads to increased autophagic flux and stress resistance. This work was partly funded by the Myrovlytis Trust, through a grant awarded to Professor Arnim Pause, at McGill University, Montréal, Canada
Paper funded by the Myrovlytis Trust published
April 12, 2014
Goncharova et al. find that deleting FLCN in mouse alveolar epithelial type II cells causes pulmonary developmental defects. This seemed to be through reduced AMPK signalling. This work was partly funded by the Myrovlytis Trust, through grants awarded to Professor … More »
Findacure: First scientific workshop on Fundamental Diseases – 14th March, 2014, Cambridge
February 7, 2014
Findacure, a charity aiming to promote the development of treatments and cures for fundamental diseases, is holding its first workshop for researchers on 14th March, 2014, in Cambridge. Speakers include Professor Tim Cox, Professor Jim Gallagher, Professor Eamonn Maher and … More »
Becoming a chartered scientist
December 3, 2013
A number of scientific professional bodies are now offering chartered status for scientists who can demonstrate on-going professional development. Dr Sharon Ann Holgate, a science writer and broadcaster, recently wrote about becoming a chartered scientist in the Science Career Magazine. … More »
Paper funded by the Myrovlytis Trust published
August 13, 2013
Wong and Harbottle (2013) successfully use a gene therapy approach to reinstate FLCN function in FLCN-null UOK-257 cells. This work was funded by the Myrovlytis Trust, through a grant awarded to Professor Harbottle at Imperial College London, UK.
Paper funded by the Myrovlytis Trust published
July 29, 2013
Bastola et al. (2013) find that FLCN partially mediates VHL’s tumour suppressor role in regulating autophagy. This work was partly funded by the Myrovlytis Trust, through a grant awarded to Professor Maria Czyzyk-Krzeska at the University of Cincinnati, Ohio, USA.
Internship opportunities
June 4, 2013
The Myrovlytis Trust currently has two part-time internship positions available for six-eight weeks in during summer 2013. Successful candidates will have a key role in enabling the growth of the Trust by completing independent projects. You will gain experience working … More »
US screening and treatment recommendations published for BHD-associated renal cancers
May 31, 2013
Last week, Dr Marston W. Linehan’s team at the Urology Oncology Branch of the National Cancer Institute/ National Institutes of Health, in Bethesda, MD, published surveillance and treatment recommendations to treat patients with BHD-associated renal cell carcinoma. Stamatakis et al., 2013 … More »
NCATS funding call for rare disease collaborative projects
May 29, 2013
The National Center for Advancing Translational Sciences (NCATS) has released a notice of intent to publish a funding call for the Rare Diseases Clinical Research Consortia. The call will take place in Autumn/Fall 2013 and is open to both current … More »
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 »
Paper funded by the Myrovlytis Trust published
February 18, 2013
Lu et al. (2014)find that inhibition of Slingshot 2 leads to a synthetic lethal phenotype in FLCN-null cells. This work was funded by the Myrovlytis Trust, through a grant awarded to Professor Eamonn Maher at the University of Birmingham, UK.
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 »
Paper funded by the Myrovlytis Trust published
February 6, 2013
Pradella et al. (2013) find that compound heterozygous mutations in the PTEN and FLCN genes were the underlying cause of oncocytic tumours resected from a Cowden syndrome patient and a BHD patient. This work was partly funded by the Myrovlytis … 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 »
Paper funded by the Myrovlytis Trust published
November 28, 2012
Reiman et al. (2012) performed gene expression arrays on isogenic FLCN-null and FLCN-expressing cells. They found 708 genes to be differentially expressed in the two cell lines. Of particular interest, multiple genes in the cadherin, Wnt and apoptosis signalling pathways … More »
Paper funded by the Myrovlytis Trust published
November 6, 2012
Medvetz et al. (2012) find that FLCN interacts with PKP4 to regulate cell-cell adhesion and RhoA signalling. This work was partly funded by the Myrovlytis Trust, through a grant awarded to Professor Lisa Henske at Brigham and Women’s Hospital and … 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.
Paper funded by the Myrovlytis Trust published
September 10, 2012
Nahorski et al. (2012) find that FLCN interacts with PKP4 to regulate RhoA signalling and cell division. This work was funded by the Myrovlytis Trust, through a grant awarded to Professor Eamonn Maher at the University of Birmingham, UK.
Paper funded by the Myrovlytis Trust published
August 28, 2012
Nookala et al. (2012) solved the crystal structure of FLCN’s C-terminal domain, revealing it to be a non-canonical DENN domain protein, suggesting a role for BHD in membrane trafficking. This work was partly funded by the Myrovlytis Trust, through a … More »
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.
Paper funded by the Myrovlytis Trust published
June 8, 2012
Jandaghi et al. (2013) report the case of a Persian family with BHD. This work was funded by the Myrovlytis Trust, through a grant awarded to Dr Nima Rezaei at the University of Medical Science, Tehran, Iran.
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.
Paper funded by the Myrovlytis Trust published
December 6, 2011
Houweling et al. (2011) report the findings of a large cohort study of 115 BHD patients and their families. This work was partly funded by the Myrovlytis Trust, through a grant awarded to Dr Lieke Gijezen at Maastricht University Medical … More »
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 »
Paper funded by the Myrovlytis Trust published
July 12, 2011
Nahorski et al. (2011) report that codons 100-230 of FLCN are under very strong purifying selection, and that eight out of 10 missense mutations found in BHD patients disrupt the protein’s stability. This work was funded by the Myrovlytis Trust, … 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.
Paper funded by the Myrovlytis Trust published
June 2, 2011
Cash et al. (2011) show that FLCN-null cells display defective apoptosis due to reduced transcription of TGFβ targets. This work was partly funded by the Myrovlytis Trust , through a grant awarded to Professor Marie-Celeste Simon at the Abramsom Family … More »
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.
Paper funded by the Myrovlytis Trust published
January 28, 2011
Lu et al. (2011) report that FLCN-null cells are particularly sensitive to the drug mithramycin. This work was funded by the Myrovlytis Trust, through a grant awarded to Professor Eamonn Maher at the University of Birmingham, UK.
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.
Paper funded by the Myrovlytis Trust published
November 8, 2010
Preston et al. (2011) report that HIF signalling is increased, leading to Warburg transformation in FLCN-null cells. This work was partly funded by the Myrovlytis Trust, through grants awarded to Dr Andy Tee at Cardiff University, UK; Professor Dr Maurice … 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 »
Paper funded by the Myrovlytis Trust published
June 30, 2010
Nahorski et al. (2010) report that frameshift mutations in the C8 mononucleotide tract in exon11 of FLCN may confer susceptibility to colorectal cancer. This work was funded by the Myrovlytis Trust, through a grant awarded to Professor Eamonn Maher at … 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 »
Paper funded by the Myrovlytis Trust published
January 30, 2010
Lim et al. (2010) report the early results from a new FLCN mutations LOVD database. This work was partly funded by the Myrovlytis Trust, through a grant awarded to Dr Derek Lim at the University of Birmingham, UK.
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 »
Paper funded by the Myrovlytis Trust published
December 30, 2009
Menko et al. (2009) report suggested guidelines for the management and diagnosis of BHD. This work was partly funded by the Myrovlytis Trust.
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 »
