Patient in Focus (www.patientinfocus.org) is an international, disease neutral, nonprofit patient organization based in Europe. Built by patients for patients. Patient in Focus provides the opportunity to make a difference for yourself and others by being a voice with healthcare professionals, researchers, industry, academics etc. We do this through patient engagement, counseling, and a strong patient community, where we can create life-changing purpose and quality of life despite chronic illness, pain, and disabled.
The opportunity
Patient in Focus is currently seeking patients and caregivers to patients with Immune thrombocytopenic purpura (ITP) for a paid, online engagement project.
ITP is a rare autoimmune disorder, in which a person’s blood doesn’t clot properly, because the immune system destroys the blood-clotting platelets.
Purpose
To share your patient journey (the road to diagnosis and first treatment), your experiences, insights, opinions, and perspectives in a manner that the sponsor can use to improve research and development initiatives, clinical trials and doctor and patient marketing material.
Your input will provide the health innovator with valuable insights and may lead to better and more effective healthcare solutions in the future for everyone with ITP.
Benefit of attending:
Sharing your unique patient (and caregiver) experiences will give the sponsor a better understanding of what you go through, so future health innovations will be much more effective and useful to patients.
Project Info
Patient in Focus is teaming up with a United States sponsor looking to gain insights from patients and caregivers to children with the blood disorder called Immune thrombocytopenic purpura (ITP).
The engagement will occur online and may include a workshop, patient/caregiver interview, survey or focus group. We are still working out the details with the sponsor.
Criteria
To qualify you must be a patient 18 years or older or a caregiver to a child under the age of 18 and live in Europe or Asia. The diagnoses must have been received at least 3 months ago.
You must be willing to speak openly and honestly about your experiences as a patient (or as a family caregiver to your child) and communicate your challenges and hopes for the future for ITP patients.
Payment
We offer a fair market value for your time and experience. The honorarium depends on the assignment and your country of residence.
We are still working out what the sponsor can pay in fair market value.
Location
Online
To apply
Sign up here: https://patientinfocus.com/patientengagement/ where you list your experiences as a patient or caregiver (called “interests”).
Then email Charlotta Norgaard at cn@patientinfocus.org with your interest to join this project.
Discover more about Patient in Focus:
Patient in Focus (www.patientinfocus.org) is an international, disease neutral, nonprofit patient organization based in Europe. Built by patients for patients. Patient in Focus provides the opportunity to make a difference for yourself and others by being a voice with healthcare professionals, researchers, industry, academics etc. We do this through patient engagement, counseling, and a strong patient community, where we can create life-changing purpose and quality of life despite chronic illness, pain, and disabled.
