If you are a passionate patient advocate with first-hand experience in BMT (as patient, caregivers, donor, or any other close experience) and would like to join the EBMT Patient Advocacy Committee, please apply!
Application Criteria
- Passionate patient advocate with knowledge of bone marrow transplants and/or cell therapy and any of the underlying diseases as: (not limited to)
- Blood-cancers treated with BMT and cell therapy
- Autoimmune diseases
- Multiple Sclerosis
- Systemic sclerosis
- Crohn's disease
- Systemic Lupus Erythematosus
- HIV
- Sickle Cell Disease
- Thalassaemia
- Pediatric Diseases
- Time to invest in meetings and organization
- Some knowledge of research and clinical trials
- Organizational skills
- Open to build an excellent network of health professionals/ leading patient advocates
- Team spirit and communication skills, work constructively with others
- Knowledge of Health Technology Appraisals and Regulators would be desirable
- English language should not be a barrier
Equality, Diversity and Inclusion
EBMT PAC takes its approach to Equality, Diversity and Inclusion seriously. We believe that improving good practice in these areas is key to unlocking the potential contributions to our work of all our Members and most important, critical to our wider work challenging health inequalities in patient care and improving how minorities are (un)represented.
Estimated time commitment
We would anticipate committee members to devote average between 18 and 24 days a year as follows:
- It is expected that all committee members attend the EBMT Annual Meeting (5 days) as well as two additional face-to-face meetings a year (2 or 3 days)
- The committee meets virtually 8 times a year (2 hours each) and we correspond via email (equivalent to 2 days per month investment). It may vary depending on the projects the PAC uptakes. But all decisions are taken by consensus.
- If a committee member joins an EBMT Working Party, there will be virtual meetings, documents to read, emails (equivalent to 1 day per month)
Working with us
- Within the Patient Advocacy Committee, we communicate via email on a regular basis, and also via a WhatsApp group for immediate messages or clarifications.
- We meet virtually over a zoom teleconferences 10 times a year (or more when needed) and meet face-to-face three times a year, where two of them should be in the country where the Annual Meeting is held.
- We attend the full EBMT Annual Meeting (5 days), which includes the latest scientific developments to share with your own patient organisation.
- At this meeting, we are also responsible for the Patient, Family and Donor Day, Patient Advocacy Track and the Patient Advocacy booth in the exhibition hall.
- Occasionally there is a need to attend extra meetings in collaboration with other parties.
Expenses
- All EBMT health professionals and patient advocates participate in all activities on a voluntary basis, giving their time and knowledge to make sure patients get the best treatment and to promote patients’ and donors’ safety.
- This role is unpaid; however, all reasonable travel and accommodation expenses are reimbursed by EBMT.
- EBMT also provides all committee members with free entry to the Annual Meeting, Educational and Scientific Events.
How to Apply
Send your CV or resume and a motivation letter (approx. 20 lines) to natachab@lymphomacoalition.org
DEADLINE for application: June 30 2024