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Terms and considerations of webinar participation

For Patients/Families/Caregivers/PAGs:

  1. I undertake that any personal data, personal sensitive data, medical reports, aspects of my/my child’s disease or photographs will be revealed voluntarily by me during the webinar.
  2. ORDI shall not be responsible or liable if there is legal injury or damage caused by the use, transfer, reference publishing, or transmission of the personal data, personal sensitive data, medical reports, aspects of my/my child’s disease or photographs revealed by me during the webinar. This may include but is not limited to questions asked by you to the speaker that involve you revealing data or information about your/your child’s condition.
  3. ORDI may contact me in the future regarding my participation in this webinar. This may include, connecting me with another participant on the webinar.
  4. ORDI will only connect you with participant(s) only after reaching out to you and asking for permission to do the same.
  5. You are not obligated to say yes to ORDI’s request to connect with other participants on the webinar or the speaker of the webinar.

For Other Participants:

(Doctor, Medical Student, and Representatives from Hospital/Industry/Scientist/Research Fellow/Pharma/Clinical trial)

  1. If there are patients/families participating – I undertake that any personal data, personal sensitive data, medical reports, aspects of the patient’s disease or photographs revealed by the participant shall not be misused or used without permission from the patient/family in writing.
  2. Contacting patients or family participants of the webinar directly is not allowed, and I undertake not to do so.
  3. If necessary I shall submit a request in writing to ORDI with reasons for the need for such contact with patient and or their families. ORDI may follow up and ask for supporting documents/endorsements to support the request.
  4. I understand that ORDI is not obligated to carry out such request.
  5. If any liability or legal injury results from interactions between the researcher/organisation/student and patient/their family, ORDI shall not be liable for the same. The parties to such interactions agree to indemnify ORDI from any legal claim or cause or damage.
  6. ORDI shall not be responsible or liable if there is legal injury or damage caused by the use, transfer, reference publishing, or transmission of the personal data, personal sensitive data, medical reports, aspects of patient’s disease or photographs revealed during the webinar. This may include but is not limited to questions asked to the speaker where data or information is revealed about the patient/family/participant’s condition.
Upcoming Events

Our Executive Director Mr. Prasanna Shirol was a part of First Ever summit dedicated to advancing equitable care for rare diseases in older adults. The meeting was attended from 25 countries across Canada, Latin America, Europe, and Asia, representing patient and caregiver communities, patient advocates, healthcare professionals, and healthcare policy experts. This is a short video highlighting the impact of the initiative to date, in the words of the COLLABORATE Community.

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