13 January 2012
On the 13 th of January 2012 the yearly Prinses Beatrix Fonds Symposium neuromuscular disorders was held. The symposium was a success with attendance of 170 people working on or interested in neuromuscular disorders. During the different presentations, the audiance was able to actively participate...

06 January 2012
On 20 December 2011 Elisabeth Cats defended her thesis "Multifocal motor neuropathy in the Netherlands: immunology, genetics and treatment." Prof. Dr. Leonard van den Berg, University Medical Center Utrecht  is her promotor and Dr. Ludo van der Pol, University Medical Center Utrecht her co-promotor....

22 November 2011
On November 1st, Michèle Sons has defended her thesis: "Roles of neuromuscular proteins at the neuromuscular junction". The majority of experimental work has been performed at the laboratory of co-promotor Dr. Jaap Plomp (Dept. of Molecular Cell Biology, Leiden University). Prof. dr. Jan Verschuuren...

15 November 2011
Dr. Richard Lemmers, working in Dr. Silvère van der Maarel’s laboratory at the LUMC in Leiden, The Netherlands, was awarded the World Muscle Society's President Prize for Young Myologist of the Year. Dr. Lemmers received this prestigious price during the 16th International World Muscle Society Meeting...

27 October 2011
The deadline for the Prinses Beatrix Fonds Year Award has been extended to November 7th. This award rewards the best neuromuscular paper with a €1000 prize. See also the anouncement or read more on the Prinses Beatrix Fonds website .

16 September 2011
       On September 22 nd , Nicol Voermans will defend her thesis: “Neuromuscular features of Ehlers-Danlos syndrome and Marfan syndrome, expanding the phenotype of inherited connective tissue disorders and investigating the role of the extracellular matrix in muscle”. Nicol...

16 September 2011
De deadline voor de Prinses Beatrix Fonds-jaarprijs neuromusculaire ziekten nadert. Deze prijs, een initiatief van de Stichting ISNO, wordt jaarlijks toegekend aan een jonge onderzoeker die in Nederland excellent onderzoek heeft verricht op het gebied van neuromusculaire ziekten. Toekenning...

19 August 2011
The department of Rehabilitation of the Radboud University Nijmegen Medical Centre has started a study on arm and hand function in people with neuromuscular disorders.  The first group that will be studied are boys and men with Duchenne muscular dystrophy. It is our intention to also study other neuromuscular...

15 August 2011
Registration has opened for a conference focused on Nervous System Autoimmune diseases to be held in Bangalore India,on January 27-30, 2012. The theme of the conference is basic science discovery to therapy of nervous system autoimmune diseases. For more information, see the conference website  or...

05 August 2011
The American Academy of Neurology has published a new guideline for the treatment of painful diabetic neuropathy (PDN). A systematic review of the literature from 1960 to August 2008 was performed, and recommendations were linked to the strength of the evidence. The basic question asked was: “What...

19 July 2011
Prinses Beatrix Fonds jaarprijs neuromusculaire ziekten De Prinses Beatrix Fonds-jaarprijs neuromusculaire ziekten is ingesteld door het Prinses Beatrix Fonds, het nationaal fonds ter bestrijding van onder meer neuromusculaire ziekten. Deze prijs, een initiatief van de Stichting Interuniversitair...

21 June 2011
Paula Helderman-van den Enden, clinical geneticist, published recently two articles as part of her thesis about the clinical genetic aspects of Duchenne and Becker muscular dystrophy. The conclusion of the first article is that in DMD families one out of three adult sisters/maternal aunts of patients...

15 June 2011
The department of neurology of the Maastricht University Medical Centre (MUMC) has launched a dutch website about Myotonic Dystrophy. The website contains information especially for patients and family members. It is written in clear language and has beautiful bright illustrations. This...

15 June 2011
On June 1st a phase III study for ALS has started. The study is done by the company Biogen in collaboration with the Dutch ALS Center. For more information, check the website of the ALS Centrum Nederland . 

25 May 2011
The first section of the thesis focuses on the neurological complications in type I Gaucher disease. Although several case reports on coincidental neurological complications in type I Gaucher disease patients had been published the non-neuronopathic character of the disease has not been debated until...

24 May 2011
In March 2011, ethical approval was obtained to start with the DEMAND III study in the Leiden University Medical Center (Principal investigator Erik Niks, pediatric neurologist). In this international phase III study, 180 boys with Duchenne muscular dystrophy will be randomized in a 2:1 ratio...

10 May 2011
On May 15th 2011 the fourth Rare Disease Day will be held in Artis, Amsterdam for all people with a rare disease and those who encounter it on a daily basis. The purpose of Rare Disease Day is to raise awareness for all people in the Netherlands that have a rare disease. On this day, hundreds of children...

05 May 2011
On the 15th of July, Alide Tieleman, neurologist at the Maasziekenhuis  in Beugen and researcher at the Radboud University Medical Centre Nijmegen, will defend her thesis ‘Myotonic dystrophy type 2. A newly diagnosed disease in the Netherlands.’  Myotonic dystrophy type 2 (DM2; OMIM 602668)...

02 May 2011
Recently a Cochrane review was published on the treatment of the postpolio syndrome (PPS). PPS is a condition that can affect polio survivors years after recovery form an initial paralytic attack by the polio virus. PPS is characterised by progressive or new muscle weakness or decreased muscle endurance...

19 April 2011
In July this year Edith Cup, occupational therapist in Radboud University Nijmegen – Medical Centre, will defend her thesis “Occupational therapy, physical therapy and speech therapy for persons with neuromuscular diseases. An evidence based orientation. This thesis composed of published and submitted...

15 April 2011
At their annual meeting on the 15th of April, the American Academy of Neurology (AAN) has been granting Professor dr. Leonard van den Berg the Sheila Essey Award 2011. The award has been assigned for his excellent research on amyotrophic lateral sclerosis (ALS), regarding environmental and genetic risk...

15 April 2011
In September 2011 the Summer School in Inflammatory Myopathies, Myositis will be given in Sweden. Information about the course, faculty, location, registration and contact person(s) can be found in the invitation letter. Registration is open between April 15 and May 15 2011 . Read invitation letter...

03 April 2011
The European Union Committee of Experts on Rare Diseases (EURERD) is charged with aiding the European Commission with the preparation and implementation of Community activities in the field of rare diseases, in cooperation and consultation with the specialised bodies in Member States, the relevant European...

25 March 2011
CHARCOT-MARIE-TOOTH TYPE 1A: natural course, pathophysiology and treatment Camiel Verhamme, 3 december 2010 Charcot-Marie-Tooth type 1A (CMT1A), also known as the Hereditary Motor and Sensory Neuropathy type Ia (HMSN Ia), is the most prevalent hereditary demyelinating neuropathy (1:5000...

01 March 2011
The yearly Biemond course will this year take place on 10-11 March 2011. The subjects are: March 10th 2011: epilepsy and sleep disorders March 11th 2011: neuromuscular disorders Location: Hotel- and congress center Papendal, Arnhem Read this for more information on the programm and registration...

25 February 2011
This January the POWER study (Prediction and Outcome of Weakness in the intEnsive caRe) started in the AMC. In a joined venture, the departments of Neurology, Clinical Neurophysiology and Intensive Care aim to develop an easy to use screening tool to predict early after intensive care admission which...

07 February 2011
Titel thesis: Functional Protein Networks Unifying Limb Girdle Muscular Dystrophy Author: Antoine de Morree Summary Limb Girdle Muscular Dystrophy (LGMD) is a rare heterogeneous disorder that can be caused by mutations in at least 21 different genes. These genes are often widely expressed and...

17 January 2011
On the 14 th of January 2011 the yearly Prinses Beatrix Fonds Symposium neuromuscular disorders was held with the central theme 'keep it simple, recognise the patterns'. The symposium was a success with attendance of more than 200 people working on or interested in neuromuscular disorders. During...

AFM, 12 January 2011
This INTERNATIONAL call for proposals aims to support research which will A. Lead to a better fundamental understanding of the neuromuscular system B. Encourage the development of therapies for neuromuscular diseases and rare genetic diseases C. Improve care and quality of life of patients...

03 January 2011
The NMD team of the LUMC in collaboration with Jos Hendriksen (behavioral sciences, Kempenhaeghe) has received a grant from the Duchenne Parent Project to perform the study ‘Brain imaging and cognition in boys with Duchenne muscular dystrophy’. Background About one third of boys with DMD shows...

01 December 2010
Every year Stichting ISNO organizes the Prinses Beatrix Fonds symposium Neuromuscular disorders. On the 14th of january 2011 this symposium will again offer a diverse program for neurologists, geneticists and pediatricians. The symposium will be held in the ABN-Amro building in Amsterdam...

17 November 2010
Drs. FM Seesing, Dr. GD Drost, Prof. GJ van der Wilt, Prof. BGM van Engelen Introduction As of January 2006, the department of neurology at the RUNMC has started offering shared medical appointments or group visits for patients with neuromuscular diseases during a pilot project. This novel approach...

26 October 2010
UMC St Radboud in Nijmegen will start in November 2010 with the DeManDII study. It is a dose comparing study for exon 51 skipping in Duchenne Muscular Dystrophy patients. A double blind placebo controlled comparison is made between: 1) a continuous weekly injection and 2) intermittent schedule...

01 September 2010
On September 1 st   2010,  dr. Jan Verschuuren was appointed as extraordinary professor of Neurology, in particular neuromuscular disorders at the Leiden University Medical Center (LUMC). This chair has been established for a period of five years and is funded by the Prinses Beatrix Fonds. ...

31 August 2010
ZonMW (the Netherlands organisation for health research and development) has awarded two research grants for n-of-one trial related projects. Project 1: From rationing to rationality: an n-of-one trial service for off-label medicines for rare (neuromuscular) diseases Background In the Netherlands,...

12 August 2010
During the congress of the Peripheral Nerve Society in Sydney, Krista Kuitwaard, resident in Neurology at ErasmusMC in Rotterdam, was awarded the Peter James Dyck prize. This award is named to one of the most important researchers in peripheral nerve disorders and is awarded yearly to a young and promising...

09 August 2010
On Friday October 8th 2010 a Dutch ALS congress will be held in De Reehorst in Ede. The title of the congress is: “AL(le)S uit de kast” The congress is initiated by the ALS Centre Netherlands together with the Dr G.J. van Hoytema Stichting. The congress is for all people professionally involved in...

20 June 2010
On 17 th of June, Liselotte Ruts obtained her doctor’s degree at the Erasmus Medical Center University Hospital, defending her thesis “Pain, autonomic dysfunction and course of disease in Guillain-Barré syndrome (GBS)". This thesis reflects the results of the GRAPH study, in which many neurologists in...

29 April 2010
On April 29th 2010 prof. dr. Gert-Jan van Ommen received a medal as a ‘Ridder in de Orde van de Nederlandse Leeuw’. The mayor of Amsterdam gave this to him in great appreciation for his scientific merits and devotion. Van Ommen had a large contribution in deciphering the human genome. He is director...

28 April 2010
On April 23rd and 24th 2010 the second joint meeting of the Belgian-Dutch Neuromuscular Study Club and the German Reference Center for Neuromuscular Diseases took place in "three countries meeting point" Vaals. The first meeting was held in 2007. The 2010 meeting was...

09 April 2010
Prof. dr. Baziel van Engelen from the UMC St. Radboud has accepted a position as research director of the ENMC since January 1 st . Baziel van Engelen is succeeding Kate Bushby who is leaving this post after three years to lead the NIH steriod trial in Duchenne muscular dystrophy. Baziel van Engelen was...

08 April 2010
Almost all neuromuscular diseases are rare, and so most drugs used for these conditions are “orphan drugs”. Since 2001 a group (Stuurgroep Weesgeneesmiddelen (WGM)) has been appointed by the minister of health to study the problems surrounding orphan drugs and rare diseases. The committee is an independent...

30 March 2010
The Prinses Beatrix Fonds finances scientific research on neuromuscular disorders and movement disorders. Researches who are working in a Dutch medical centre or university can apply for funding. This year the deadline for submission is on May 3rd 2010. For more information and the application form check...

11 January 2010
On the 8 th of January 2010 the yearly Prinses Beatrix Fonds Symposium neuromuscular disorders was held with the central theme '10 golden rules for each problem'. The symposium was a success with attendance of 200 people working on or interested in neuromuscular disorders. During the different presentations,...

07 January 2010
Titel thesis: Redefining the non-dystrophic myotonic syndromes. Phenotypic characterisation based on genetic testing. Jeroen Trip Summary Chapter 1 gives a general introduction to non-dystrophic myotonic syndromes (NDMs). Chapter 2 comprises a systematic review about drug treatment for myotonia....

01 November 2009
  At the annual congress of the World Muscle Society (WMS) in Geneva, September 9th-12th, Nadine van der Beek and Juna de Vries presented the results of Enzyme Replacement Therapy (ERT) in 73 Dutch adult Pompe patients on muscle strength and pulmonary function. The two young research physicians...

01 November 2009
On november 11-12th 2009 ISNO will organise a meeting for people in the Netherlands working on neuromuscular disorders. For more information about the program or registration, mail us

28 September 2009
On Friday October 2, 2009,  dr A.T. (Ans) van der Ploeg, appointed as extraordinary professor of Peadiatrics, in particular lysosomal storage disorders at the ErasmusMC, Faculty of Erasmus University Rotterdam, on behalf of the Prinses Beatrix Fonds, will publicly accept her appointment with...

25 September 2009
M. H. van der Linden Keywords: Charcot-Marie-Tooth disease (CMT), Hereditary Motor and Sensory Neuropathy (HMSN), gait, posture, perturbation, reflex, atrophy, proprioception Charcot-Marie-Tooth disease (CMT, also called Hereditary Motor and Sensory Neuropathy, HMSN) is the most common hereditary...

29 July 2009
The yearly symposium neuromuscular disorders will take place on January 8th 2010. This time, we have a new location for the symposium which will be held in the ABN-Amro building in Amsterdam (Gustav Mahlerlaan). This location can easily be reached by car (ring A10) and train (station Amsterdam Zuid)....

06 July 2009
Recent consultations with the board of the Dutch Society of Neurology (NVN), the Belgian-Dutch Neuromuscular Study club (BNNS) and ISNO let to the establishment of a working group on neuromuscular disorders as part of the NVvN. This new working group will be a platform for researchers and clinicians interested...

26 May 2009
Quantitative muscle ultrasound in childhood neuromuscular disorders Sigrid Pillen, Radboud University Medical Center The thesis describes the use of muscle ultrasound for the detection of neuromuscular disorders and its  ability to accurately visualize changes in muscle thickness and texture....

24 March 2009
The Dutch Scientific Organization has awarded a grant to Dr. Dirk J. Lefeber, (UMC St Radboud) entitled “High-resolution glycoprofiling in human medicine” for innovative nanoLC- mass-spectrometry equipment. This technology forms an essential extension of the current infrastructure and enables highly...

04 February 2009
Deadline abstract submission European Neurological Society ( ENS ) Meeting: February 11th 2009. For more information, check the website Deadline abstract submission European Society of Human Genetics ( ESHG ) Meeting: February 13th 2009. For more information, check the website Deadline abstract...

30 January 2009
ALADIN: All against Duchenne in the Netherlands Goal The ALADIN consortium is founded to exchange information regarding scientific research and clinical health care for Duchenne patients, and to improve collaboration between the different centres. Each half year a meeting is organized where different...

09 January 2009
On the 9 th of January the yearly Prinses Beatrix Fonds Symposium neuromuscular disorders was held with the central theme 'From disease to gene to cure'. The symposium was a success with attendance of 130 peopl e working on or interested in neuromuscular disorders. During the different presentations,...

16 December 2008
This new ISNO website is presented during the Boerhaave symposium on Neuromuscular disorders on the 9th of January 2009. This site forms a platform for Dutch researchers in neuromuscular disorders. Here they can find information on other professionals, important events, deadlines, trials, disorders, treatments...