Training, Mentorship, and Capacity Building Initiatives for Patient Organizations Serving the Hereditary Blood Disorders Community
Target: Patient organizations serving the Hereditary Blood Disorders Community.
The Goal of the Program: Through this skills development program, we will ensure a more resilient, empowered, and effective inherited blood disorder community and effectively improve the health outcomes of our diverse populations.
Who are our Trainers and Mentors? Our mentors and trainers are leaders of established patient groups, and clinicians adept in working with governments, bureaucrats skilled in policy development, public affair consultants, volunteers and staff members with interest in advocacy and capacity building.
Currently recruited trainers and mentors are from North America, Middle East and Africa regions. We will continue to recruit trainers and mentors to support this program on an ongoing basis.
Improving Access to the Training, Mentorship and Capacity Building Program: The GANSID may provide electronic devices to member organizations who might not have this essential tool to access the online training and mentorship program.
The GANSID also hopes to support 5 member organizations with no website presence to secure website presence in 2024.
Program Structure: The program is divided into 3 parts- Training, Mentorship and other Capacity building Initiatives
- Training Program: To develop the skills set of its members, in 2024 the Network will develop a 7-module E-course based on the need areas most identified by GANSID members (see chart below). Based on GANSID’s conducted survey of its member organizations, the most identified need areas are: Fundraising, Advocacy, Volunteer Recruitment, Training and Retention, Leadership Styles, Project Management, Communication Strategies, Strategic and Workplan Development.
The training program will hold over a 3-month period after which period, the patient organizations that successfully completed the program will be given a certificate of completion. The first training will start in the second half of 2024.
Training Modules
Module 1 – Fundamentals of Effective Advocacy
Module 2 – Fundraising Strategies that drives results
Module 3 – Volunteer Recruitment, Training and Retention
Module 4 – Leadership Styles: Know What Works and What May Not Work
Module 5 – Project Management
Module 6 – Efficient Communication Strategies to Learn
Module 7 – Developing Impactful Strategic and Work Plans
Who Can Participate in the Training Program? The training will be available to all member organizations of the GANSID that register within the given registration deadline. It will be offered once in 2024 and based on feedback, might be offered twice/year starting in the year 2025. There will be no cost to participation for the patient organizations.
The modules will be developed taking into considerations regional and cultural nuances; and will be delivered virtually.
In the near future, as GANSID develops its own capacity, it may consider offering some of these sessions in an in-person format across the regions.
To participate in the training program, a patient organization must be a member organization of the GANSID. Apply for membership at the link here: https://inheritedblooddisorders.world/apply-for-membership. Approved member organizations will be sent a link to register for the training program.
Remuneration: A token of appreciation would be provided to the trainers
- Mentorship: After the training program, successful organizations would then be paired with mentors to provide continued guidance to the mentees for a period of another 3 months. Both the mentor and the mentees will submit a report of their mentorship work.
Remuneration: A token of appreciation would be provided to the mentors
Other Capacity building Initiatives:
After completing the training and mentorship programs, the GANSID will actively encourage the patient organizations that graduated from these programs to utilize the competencies received to embark on an evidence-based initiative to support people with HBDs in their own communities.
After the mentorship program, participating organizations will be asked to submit either a disease specific or cross-disease collaborative initiative (involving 2 or more organizations). One or more organizations from each region with the best disease specific or cross-disease project in a given year would receive some financial prize to support their work. 50% of Prize amount would be provided at the beginning of project and the balance provided after the completion of the project.
Participating organizations will provide a report at the end of the project.
Remuneration: A prize will be provided to selected projects across 4 or more regions with the highest unmet needs.