Medical Research Grant Application Guidelines : Progeria Research Foundation
The foundation is proving several grants such as Innovator Awards, Established Innovator Award, and Specialty Award. Details are provided on their website.
Grants
AFM Telethon: Call for proposals
Several call for proposals are being made available by AFM Telethon. They have published a call for proposals for Spinal Muscular Atrophy and Collagen VI Call for Projects.
Palliative Care Needs of Individuals with Rare Advanced Diseases and Their Family Caregivers (R01 and R21)
This funding opportunity announcement (FOA) seeks to expand knowledge and increase the evidence base for palliative care (PC) in advanced rare diseases, including rare cancers, and to improve physical and psychosocial well-being and quality of life among seriously ill individuals and their family caregivers. This funding opportunity announcement (FOA) seeks to expand knowledge and increase the evidence base for palliative care (PC) in advanced rare diseases, including rare cancers, and to improve physical and psychosocial well-being and quality of life among seriously ill individuals and their family caregivers. The deadline for receipt of applications is the 8 January 2017.
E-Rare-3 Call for proposals 2017: Transnational Research Projects for Innovative Therapeutic Approaches for Rare Diseases
The aim of the call is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with a clear translational research approach. Projects shall involve a group of rare diseases or a single rare disease following the European definition i.e. a disease affecting not more than five in 10.000 persons in the European Community, EC associated states and Canada.
The deadline for receipt of applications is the 8 January 2017.
Courses & Educational Initiatives
European Cytogenetesists Association
Date : 05 January 2017
At : Nimes, France
February/March of each year
This course is designed to provide advanced training in constitutional, haematological, and oncological cytogenetics to medical graduates, pharmacists, pathologists, biologists, health professionals and researchers, with an academic qualification. The students will be trained to identify genetic abnormalities for diagnosis and prognosis, and for fundamental and applied research using both classical and molecular cytogenetic techniques. The course is co-organized by E.C.A. and two French Universities, either as a stand-alone course with only the theoretical part or as a University Diploma including both theoretical and practical training. An application for CME points will also be made for 2016.
Building rare communities workshop
Date : 05 February 2017
At : Birmingham, United Kingdom
The Building Rare Communities project empowers patient support groups to be a reliable and sustainable source of information and support. They will also empower you to develop the organisation to meet your patients’ needs. Genetic Alliance UK is running a one day workshop which will take place in Birmingham.
European Advanced Postgraduate Course in Classical and Molecular Cytogenetics
Date : 05 January 2017
At : Nimes, France
An Online Educational Resource for Limb Girdle Muscle Weakness
Date : 05 January 2017
At : Online
Limb girdle muscle weakness (LGMW) can result from multiple causes. Early and accurate diagnosis is critical to optimal disease management. The diagnosis can involve clinical, electromyogram, and genetic findings. Patient specific multidisciplinary management plans, including genetic counseling, should be developed. Currently, there are drugs available for some conditions. Many providers lack the skills to provide optimal care due to the heterogeneous presentation, complex diagnosis, and rarity of LGMW disorders.
ExPRESS 2017 Expert Patient and Researcher EURORDIS Summer School
Date : 06 June 2017
At : Barcelona, Spain
The programme allows patients and researchers to sharpen their advocacy skills and gain an understanding of the regulatory process of orphan medicinal products so that they are able to advocate at a European level. The programme has online and face-to-face components. The face-to-face portion trains 40 expert patients annually as part of an intensive 4.5 day course held in Barcelona, Spain.
What's on Where?
rare disease
From 24 to 25 January 2017
At : Paris, France
VEry foood conference
15th Annual King's College Neuromuscular Disease Symposium
Date : 28 January 2017
At : London, United Kingdom
This annual educational meeting is aimed primarily at clinicians who treat patients with diseases of the peripheral nervous system and muscle.
From Genomics to Therapy
Date : 06 February 2017
At : Barcelona, Spain
Human Genome Meeting (HGM) is the key annual conference organised by the Human Genome Organisation (HUGO). Initially structured as a dedicated meeting for Human Genome Mapping, the HGM has evolved into a major scientific conference for human genetics & genomics, genomic medicine, and genomic biology. The HGM is also an excellent platform for industry partners and bio-technology companies as well as pharmaceutical giants.
For further information
Patients as Partners EU
Date : 07 February 2017
At : London, United Kingdom
Patients as Partners EU is co-produced with patients, industry, academia, government and nonprofit organizations to establish a well-rounded program that addresses the needs of all stakeholders seeking to implement and advance patient involvement across the entire clinical development continuum.
For further information
3rd International Rare Disease Research conference
Date : 09 February 2017
At : Paris, France
All stakeholders – active investigators, policy makers, opinion leaders, critical thinkers, young researchers and patient advocates alike – active in the area of rare diseases from across the globe are invited to join us to celebrate achievements in the field, identify future milestones and goals, and work toward bringing diagnoses and therapies to all rare disease patients.
For further information
2017 Rare Disease Day Symposium Alagille Syndrome — New Research, New Hope
Date : 25 February 2017
At : La Jolla, United States
The 2017 SBP Rare Disease Day Symposium will focus on Alagille Syndrome, with emphasis on the areas of biliary paucity, genetic mechanism, Notch signaling, and biliary development/regeneration. Scientists, clinicians, advocates, patients and their families are invited to join experts in the ALGS field to foster new perspectives, ideas, and collaborations and accelerate efforts toward a cure for this syndrome.
For further information
7th International Meeting on Pulmonary Rare Diseases and Orphan Drugs
Date : 25 February 2017
At : Milan, Italy
This meeting will highlight that rare diseases represent an important field of medicine not only for pulmonologists who are skilled in diagnosing and treating particular groups of these illnesses but for all respiratory physicians
For further information
BPSU - Rare Disease Conference 2017: From bench to bedside - new treatments for children with rare disease
Date : 28 February 2017
At : Birmingham, United Kingdom
The conference will will allow cutting edge scientific data to be presented from world leading clinicians, scientists, policy-makers and patient groups.
For further information
The Right to Health: The Rare Disease Perspective
Date : 11 February 2017
At : Geneva, Switzerland
The is a Rare Diseases International Policy Event event which will gather international experts in the fields of public health, human rights, epidemiology, scientific research and patient advocacy to discuss why and how rare diseases should be included in the global health agenda.
For further information
Findacure Scientific Conference on Drug Repurposing for Rare Diseases
Date : 01 March 2017
At : London, United Kingdom
This day long event seeks to create a forum that brings together patient groups, clinicians, researchers, biotech companies, and the pharmaceutical industry to discuss the role that drug repurposing can play in the future of rare disease treatment.
For further information
Rare and Undiagnosed Diseases: Discovery and Models of Precision Therapy
Date : 06 March 2017
At : Massachusetts, United States of America
Through this meeting, participants should become familiar with rare and undiagnosed disease programs, acquire insights into new disease mechanisms, learn about potential therapeutic targets, and establish collaborations that enhance rare disorder expertise and new disease discovery. The meeting will bring together physicians who are expert in rare disorders with scientists who know metabolic pathways and mechanisms, advancing understanding and therapy.
For further information
5th Annual Paediatric Oncology Conference
Date : 03 March 2017
At : Brussels, Belguim
The conference is part of a unique multi-stakeholder joint initiative, the ACCELERATE multi-stakeholder Platform. Co-organised by CDDF, ITCC and SIOPE, this platform provides a transparent forum enabling patients and parents’ organisations, academic paediatric oncologists and haematologists, pharmaceutical companies and EU regulatory network representatives to collaborate and jointly address specific obstacles to a faster and more effective treatments for children and adolescents with cancer, including the needed changes to the Paediatric Medicines Regulation.
For further information
Paediatric Clinical Trials
Date : 21 March 2017
At : London, United Kingdom
This conference will discuss current clinical trials, implementation and paediatric drug development in a series of interactive conference sessions, roundtables and workshops led by leading industry experts.
For further information
15th WFH International Musculoskeletal Congress
Date : 06 May 2017
At : Seoul, South Korea
The Congress program will feature presentations, posters, and exhibit displays with a focus on musculoskeletal approaches to hemophilia. Key developments in the field will be addressed, making the event relevant to orthopedists and physical therapists around the world.
For further information
Advances in transgenic animal models and techniques
Date : 12 May 2017
At : Nantes, France
The meeting will give the opportunity to update information on techniques and models in transgenesis and genetic engineering.It is intended for Master, PhD and medical students with a background in molecular biology and genetics as an introduction to future work in these rapidly developing areas of research.
For further information
4th International Clinical Trials Methodology Conference
Date : 08 May 2017
At : Liverpool, United Kingdom
This event promises to be a unique opportunity for those working in clinical trials to collaborate at a world leading conference venue to discuss the issues pertinent in trials today.
For further information
11th European Cytogenetics Conference 2017
Date : 02 July 2017
At : Florence, Italy
3rd World Conference on Congenital Disorders of Glycosylation
Date : 16 July 2017
At : Leuven; Belgium
The "World Conference on Congenital Disorders of Glycosylation (WCCDG) for Families and Professionals” is a biennial event fruitfully designed in collaboration with leading experts in the
International Ataxia Research Conference IARC
Date : 28 September 2017
At : Pisa, Italy
GoFAR, FARA and Ataxia UK in collaboration host what will be the second edition IARC where the latest research on 'Friedreich's ataxia will be presented and discussed. SCA and other progressive ataxias will also be presented and discussed. Plenary sessions will include the progress in the field of gene therapy, animal and cellular models, approaches pharmacologists and their development and clinical research.
For further information
Commercial Events
Pharma Pricing & Market Access Congress
Date : 23 February 2017
At : London, United Kingdom
Discuss pricing, patient centricity and global market access all in one place. With collaboration high on the agenda, World Pharma Pricing and Market Access gives you excellent opportunities to hear from payers, pharma, patient led organisations and providers. Attend Europe’s largest, most respected market access and pricing conference to benchmark y0strategic decision making. - See more at: http://www.healthnetworkcommunications.com/conference/pharma-pricing/index.stm#sthash.OxQSl6E4.dpuf
For further information
Orphan Drugs and Rare Diseases Europe 2017
Date : 15 May 2017
At : Berlin, Germany
This conference will discuss the controversial German pricing mechanism as well as bring together leading industry professionals to discuss the latest regulatory developments, explore how to reduce costs and learn from the latest innovations in the orphan drug landscape.
For further information
World Orphan Drugs Congress Asia
Date : 04 June 2017
At : Singapore
Bringing together specialised biotechs/pharmas, government, payers, investors & patient groups in one platform, this event offers a unique opportunity to increase brand visibility amongst the rare disease industry in Asia.
For further information