Rare Disease Foundation Strategic Plan 2016 – 2019
Societal Vision: Revolutionizing rare disease care
Mission: To create communities of patients, caregivers, health care providers, researchers & supporters, that work together to transform the lives of those living with rare disease
- We are focused on the best interest of our community
- We take pride in being nimble, agile and efficient
- Our approach is disruptive of the status Quo. Our work is transformative.
- We create community, a sense of belonging and enfranchise the disenfranchised.
- We create hope and empower.
- We celebrate resiliency of the community we serve.
- We are collaborative and connected.
Strategies, Actions and Measures of Success
|Strategy||Action||Measures of Success|
|1) Grow and nurture our Peer 2 Peer Groups to become the go to representative for those affected by RD|
|Define and formalize relationship (legal and role expectations) with P2P groups and leaders of the groups.||· Evidence of expansion of P2P for both parents and adults in centers without genetic departments
· 25 new P2P groups in North America.
· Sustained growth of existing groups (metrics, # people per meeting, # meetings per year, #people reached virtually, # ancillary events hosted)
· Yearly report completed by each group/leader
|Establish P2P groups in smaller communities.|
|Develop P2P Manual and streamline process for starting and operating new groups|
|Improve access to P2P groups through virtual and webcast technology|
|2) Develop efficient and robust infrastructure.|
|Grow staff and develop role clarity with existing staff and board. (This could include hiring of a development director, support staff etc.)||· Staff and board engagement, satisfaction and retention.
· Staff and board workload balanced and managed.
· Increase in board and volunteer participation
|Strategic Board Growth; Grow the board to include more regional representation as well as adults in rare disease community (not just parents) ideally matched with skill sets we need for the board|
|Develop bylaws and constitution for RDF.|
|Expand volunteer and board committee structure.|
|Develop information and technology systems to meet continued and future needs of the society. These could include website, financial system, HR systems).|
|Strategy||Action||Measures of Success|
|3) Enhance online, communication and marketing identity and capacity|
|Develop a marketing plan and internal capacity to support execution of the plan.||· Within first year present a developed marketing plan to the board that includes specific measures of success.
|Redesign our website.|
|Complete bilingual conversion of all materials and website.|
|Create repository of resources.|
|Clarify our online messaging and ability to connect our communities.|
|4) Develop consistent, reliable, scalable and funding streams for our programs, research and operations|
|· Within first 6 months , RDF Board Fundraising Committee to present a developed fundraising plan that includes
o Large Donor outreach
o Multiple layers of donors and fundraising events
o Maximize use of our member and volunteer database
o Develop consistent, reliable funding sources.
o Set goals/ forecasts for funding.
|5) Increase awareness and engagement of RDF within the healthcare trainee and provider community|
|Create Framework/strategy to support education including online information sharing.||· Improved awareness and knowledge of healthcare providers of Rare disease and the Rare Disease Foundation as measured by:
o Types and numbers of materials distributed to medical trainees
o Events attended
o Invitations to presentations
o Utilization of RD healthcare trainee and provider programs.
|Make inventory of RDF programs available to healthcare trainees and providers.|
|6) Develop a RD research program identity|
|Assess the current research mandate and significant roles of micro-grant programs, N of 1 research methodology and RD Collaboratory.||· Within first 6 months Research Committee to present assessment and decision on current research mandate and programs to Board.
· Increase the Number of research effort/ projects that meet the RDF funding criteria while maintaining a funding rate of 50%
· Reports for all completed research projects handed in