Education makes man a ideal thinker. Instruction for all comes with a great number of benefits which are both financial and personal. It has an immediate impact on a child’s reproductive health hence there’s requirement for supply of quality basic education for children, youth as well as adults. It is but one of those areas that decisively marches towards bigger and better chances for everybody who would like to make their degree without needing to breathe or even leave the house. [Read more…]
The Interdisciplinary Scientific Committee (ISC) is establishing a Task Force on Clinical Research Networks for Rare Diseases aiming to map and analyse the existing ecosystem of national/supranational clinical research networks, and develop policy recommendations on guiding principles for an international framework of collaboration of these networks.
The ISC is looking for members to populate this Task Force with the below expertise in one or more of the following areas:
- Clinical research network coordination
- CRN clinical/research practice
- Clinical data sharing and reuse for research
- Establishment of good clinical practices
- International rare disease policy and regulatory issues
- Patient advocates
- Research funders
The usual time commitment includes quarterly 1-hour teleconferences, one face-to-face workshop (1-2 days), and regular email correspondence.
If you are interested in taking part in this activity, please send a CV, biosketch and letter of motivation (one paragraph each) to the Scientific Secretariat before May 20, 2019.
Importantly, do not forget to add in the subject of your email the reference of the project (Ref: TF-ISC-CRN).
Only selected candidates will be contacted. Other applications will be kept for potential future use.
We are pleased to announce the election of Dr Durhane Wong Rieger, President & CEO of the Canadian Organization for Rare Disorders (CORD), as the Chair of the Patient Advocacy Constituent Committee (PACC).
Durhane Wong Rieger, PhD, is the President & CEO of the Canadian Organization for Rare Disorders (CORD). She is also the President & CEO of the Institute for Optimizing Health Outcomes (Canada), Chair of the Consumer Advocare Network and Chair of Canadian Heart Patient Alliance.
Additionally, Dr Durhane is involved in many international projects on rare diseases. She serves as Chair of the Council for Rare Disease International, member of the Steering Committee of the UN NGO Committee for Rare Diseases, Board member of Asia Pacific Rare Disease International, member of the Editorial Board of The Patient- Patient Centred Outcomes Research, member of the Global Commission to End the Diagnosis Odyssey for Rare Diseases and member of Health Technology Assessment International Patient /Citizen Involvement Interest Group.
She takes over the Chair position from Sharon Terry, President and CEO of Genetic Alliance, who continues as member of IRDiRC’s Patient Advocacy Constituent Committee.
The Diagnostic Scientific Committee (DSC) is establishing a Task Force on to address barriers to the diagnosis of rare diseases for Indigenous peoples, so as to help address critical areas that will need to be served if IRDiRC Goal 1 is to be met. The Indigenous Population Task Force will bring together the community addressing this challenge to identify priority areas and share best practices regarding current and future approaches in need of development to support improved, more equitable and culturally secure rare diseases diagnosis for Indigenous populations. This includes, but is not limited to those living in rural and remote areas.
Therefore, the DSC is specifically looking for members to populate this Task Force. Please see here for the full description of the experts profiles and the application procedure.
“We call for a global moratorium on all clinical uses of human germline editing — that is, changing heritable DNA (in sperm, eggs or embryos) to make genetically modified children”.
With this opening sentence in a commentary published this week on Nature, Eric Lander and a group of eminent scientists and bioethicists request an international governance framework to address this challenging theme.
IRDiRC fully endorses their call. Sharon Terry, who represents Genetic Alliance in IRDiRC, has co-authored the commentary.
The new technologies of genome editing bear the potential to correct the genetic defects at the root of many human diseases in somatic cells with unprecedented precision and ease; nonetheless, extending application of these tools to the human germline is fraught with serious concerns that cannot be addressed by the scientific community alone.
The proposed moratorium does not intend to ban research to make therapeutic application of genome editing safe and effective, but calls for a five-year time to build an international network allowing the scientific community and national decision makers to address the medical, social and ethical implications of germline genome editing.
IRDiRC strongly supports the proposal by Lander and colleagues, while encouraging continued research to bring genome editing techniques to the safety and efficacy levels required to transform such potential into effective therapies for rare diseases.
Disclaimer: This statement expresses the outlook of the IRDiRC community and does not necessarily represent the official endorsement by individual IRDiRC member organizations. For more information on contents provided on this website see also IRDiRC Disclaimer.