Key Opinion Leader (KOL) event on glioblastoma
04 September 2018
Venue : Frankfurt, Germany
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04 September 2018
Venue : Frankfurt, Germany
7 September 2018
Venue : Amsterdam, Netherlands
From 12 to 16 September 2018
At : University of London, UK
14 September 2018
Venue : Lausanne, Switzerland
From 14 to 15 September 2018
At : Freiburg, Germany
Registration deadline 31 July 2018.
17 September 2018
Venue : Paris, France
From 17 to 18 September 2018
At : Cambridge, MA, USA
19 September 2018
Venue: Paris, France
From 19 to 21 September 2018
At : Stockholm, Suède
20 September 2018
Venue : Paris, France
25 September 2018
Venue : London, UK
26 September 2018
Venue : Aegli Zappeion, Greece
This one-day event is dedicated to X–Linked Hypophosphatemic rickets (XLH) and will bring together experts, patients and parents from across the globe to discuss all aspects of this disorder; pathophysiology and current research, clinical manifestations, challenging cases and treatment throughout the lifespan.
From 26 to 27 September 2018
At : Vilnius, Lithuania
From 26 to 29 September 2018
At : Ghent, Belgium
From 03 to 05 October 2018
At : Basel, Switzerland
10 October 2018
Venue : Glasgow, Scotland
From 14 to 17 October 2018
At : Bratislava, Slovaquie
From 15 to 16 October 2018
At : Washington D.C., USA
From 17 to 18 October 2018
At : Holiday Inn Kensington Forum, 97 Cromwell Road, London, UK
At this year's Orphan Drugs and Rare Diseases conference, taking place on 17th – 18th October in London, industry experts will address the opportunities and challenges within the rare disease treatment field.
HIGHLIGHTS IN 2018:
FEATURED SPEAKERS:
There will also be an interactive workshop on 16 October, run by JG Zebra Consulting who will be looking into the topic of: "Working together for HTA in rare diseases - A step too far or the way forward?"
From 16 to 20 October 2018
At : San Diego, USA
From 19 to 21 October 2018
At : Cobham, Surrey, UK
From 22 to 23 October 2018
At : Lisbon, Portugal
From 31 October to 01 November 2018
At : Montreal, Quebec
From 06 to 08 November 2018
At : Barcelone, Espagne
From 19 to 23 January 2020
At : London, UK
From 09 to 10 October 2018
At : Rome, Italy
Register before: 25 septembre
From 10 to 12 October 2018
At : Florence, Italy
This ERN-EYE workshop will be mainly dedicated to genetic testing and will allow the publication of a white paper on genetic testing for rare eye diseases in the European Union, coordinated by the chairs of the TWG6 genetic testing group, Prof. Graeme Black and Prof. Frans Cremers.
From 06 to 07 December 2018
At : Paris, France
This event is dedicated to « New Progress in Osteoarticular Research : From Cell Environment to Human Ecosystem ».
Abstract submission is now open, until 14 September 2018. Registration is free but required on account of limited places.
From 11 to 15 March 2019
At : Imagine Institute, Paris, France
Applications are now open. Applicants will be notified of the outcome of their application by mid October.
The Orphan Disease Center (ODC) at the University of Pennsylvania announced the Mucopolysaccharidosis Type I (MPS I) Pilot Grant Program. One-year grants up to $150,000 (direct costs) will be available to develop novel nucleic and cell based treatments for MPS I.
The proposed therapeutic strategies should address the CNS manifestations of MPS I in patients with the severe and attenuated forms of the disease. Approaches that also address the somatic manifestations of the disease not effectively treated with enzyme replacement therapy are welcome. The following non-inclusive list of topics are responsive to this RFA:
The applicant must have a proven track record in the development of novel therapeutics that progress toward clinical applications. The applicant must demonstrate utility of the proposed therapeutic platform in MPS I animal models during the course of the grant. A second year of funding is possible but should not be incorporated into the initial application.
This Request for Applications (RFA) is open to the international community. You do not need to be based in the United States to apply. All individuals holding a faculty‐level appointment at an academic institution or a senior scientific position at a non-profit institution or foundation are eligible to respond to this RFA. We ask that you please share this funding opportunity with your department or other relevant researchers.
Letters of Interest (LOIs) are due no later than 10 September 2018 by 8pm EST.
DEBRA International is now inviting expressions-of-interest for research into the processes of chronic inflammation and fibrosis (CIF) in epidermolysis bullosa (EB). Research into the role of these processes and aberrant wound healing in the initiation and spread of associated squamous cell carcinoma (SCC) in EB is also welcome.
The focus of the call is on chronic inflammation and fibrosis in EB, for the purpose of identifying possible targets for treatment or prevention, and preventing the initiation or spread of associated squamous cell carcinoma. Development of therapies that would address the underlying genetic defect, or established agents/methods that are used to treat squamous cell carcinoma fall outwith the scope of this call. Proposals in the latter categories may be submitted to the DEBRA International 'All-Priorities Spring 2019 Research Call'.
The Stage 1 form to register an "Expression of Interest" should be submitted via the online system by 17 September 2018.
The National Center for Advancing Translational Sciences (NCATS) Office of Rare Diseases Research (ORDR) has published two Funding Opportunity Announcements for the Rare Diseases Clinical Research Network (RDCRN) :
Letters of intent are due for 9 September 2018, application are due for 9 October 2018. Applicants are encouraged to apply early to allow adequate time to make any corrections to errors found in the application during the submission process by the due date.
This call for proposals aims to support an innovative project on new strategies for basic, preclinical or clinical research for patients with Von Willebrand Disease.
Potential applications of this project should be of benefit to patients. The proposal should foster progress on the diagnosis of the disease, on its understanding, to provide answers in the improvement of existing treatments or even to go towards new innovative therapies. All requests concerning all or part of these criteria will be considered.
Funding of €50,000, awarded for one year, will be awarded in the form of a one-year fixed-term contract (established by agreement with the host organizations) to a postdoctoral researcher (clinician or scientist).
Depending on the proposal(s) selected and the results obtained, the financial support of the AFH may be renewed annually, one or more times, or readjusted by the Board of Directors (CA) of the AFH. The amount of this future support is currently not defined and will depend on the donations collected by the association at their maturity.
The deadline for submitting applications is 10 Octobre 2018.
Completed applications must imperatively be sent by mail to Geneviève Piétu (genevieve.pietu@afh.asso.fr).
The Innovative Medicines Initiative (IMI) has launched several calls for proposals. The topics address, among others, brain disorders (e.g. Alzheimer's disease, Parkinson's disease, Huntington's disease, major depression) and immune-mediated diseases (e.g. rheumatoid arthritis and lupus as well as inflammatory bowel diseases such as Crohn's and colitis, and skin diseases like dermatitis and psoriasis). The aim of the topics is to make clinical trials more patient-centric, contribute to medicine safety, and apply blockchain technologies to the drug development and health sectors.
Stage 1 submission deadline: 24 October 2018
Please send your CV and cover letter citing the reference US14-2018-05 to:
Please send your CV and cover letter to:
Please send your CV and cover letter citing the reference US14-2018-05 to:
As of July 2018, the Joint Action on Rare Cancers (JARC) has a new presentation leaflet.
The National Organization for Rare Disorders (NORD) has issued a call for video submissions on the patient advocacy experience. The videos will be the latest part of a year-long campaign marking the organization’s 35 years of voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most.
“35 Years & Growing: Personal Stories from the New Era of Patient Advocacy” is a campaign that aims to collect personal reflections through self-recorded video submissions in which advocates will discuss their own motivations, share ideas on how to engage more individuals in advocacy, provide tips for new advocates and more. Select videos will be featured on NORD’s Youtube channel and used to help support NORD’s advocacy programs by sharing real-world, inspirational examples of rare disease advocacy in action and the importance of getting involved.
For more information on the video campaign, including guidelines, submission instructions, suggested questions, video tips and sample videos, click here. The deadline for submissions is 19 September 2018.