Strategies Actions

Request to ICORD Membership for Work Groups Members

Dear members,

ICORD is seeking participants to assist in the development of an initiative to address Rare Diseases issues in Latin American Countries and Caribbean Nations. We have identified 10 major issues we would like to receive your opinion to guide future discussions of the Steering Committee and Work Groups. We have had two separate Zoom Conference calls to open the discussion of these issues.
Please find here the summary. Slides from these presentations are available for your review.

Please let us know if you would like to participate in any of the Work Groups of your choice (please see list at the end of this E-Mail) and share your knowledge and experiences in rare diseases. Thank you for your consideration. Self-nominations can be sent to Dr. Juergen Reichardt.  His contact information is below.
Please include:

  • A limited CV of no more than 5 pages and
  • the list of Work Groups in order of preference you would like to join.

***ICORD Board Members please note you will receive a separate Doodle Poll request to schedule a call in September to discuss this and several other issues.

Stephen Groft, USA
Juergen Reichardt, Australia
Manuel Posada, Spain
Domenica Taruscio, Italy

 

Request for Work Group Members from Dr. Juergen Reichardt

Dear Colleagues,

Please remember to self-nominate by 31st August 2020 with a short (5 pages max.) CV and a list of 1-3 work groups you wish to contribute and please also provide suggestions on any of the issues  we may have missed and what should be combined as well if applicable.

Thanks for your interest and commitment to ERCAL and rare diseases in Latin America and the Caribbean.

Contact Information: Juergen Reichardt, PhD  juergen.reichardt@jcu.edu.au
Adjunct Professor
Australian Institute of Tropical Health and Medicine James Cook University, Australia
T 07 4232 1512   I   T (INT’L) +61 7 4232 1512
JCU Cairns   I   Smithfield   I   Building E1   I   Room 003D
PO Box 6811 Cairns QLD 4870 AUSTRALIA

A Framework of the 10 Areas of Emphases for ERCAL :

  1. Research Infrastructure – National Legislation, Needs Assessment, and Health Care, Research, and Regulatory Policies
  2. Research Collaboration/Research Networks and Consortia
  3. Technology Advances – Telehealth, Telemedicine
  4. Training of Research Investigators and Clinicians
  5. Clinical Care and Treatments
  6. Diagnosis and Genomic Advances
  7. Underserved populations such as indigenous people who are economically disadvantaged and under-reported.
  8. The Expanding Role of Patient Advocacy Groups
  9. Preclinical Innovation, Product Discovery, and Development
  10. Impact of COVID-19 Pandemic on Rare Diseases Research – Present and Future Concerns and Other Opportunities