Rare Disease Foundation – Strategic Plan – May 2019
Societal Vision: Revolutionizing rare disease care.
Mission: Connecting and serving communities of patients, caregivers, health care providers, researchers & supporters to transform the lives of those living with rare disease.
- We are inspired by the resiliency and determination of the rare disease community. We want to serve and support the community in as many was as possible
- We listen to the needs of the community and amplify the voices of those affected by rare conditions
- We are agile and efficient but also innovative and transformative, much like the community we serve
Strategies, Actions and Measures of Success:
|1) Become a magnet organization for volunteers engaged in the Rare Disease space.|
|Develop approach to appreciate and celebrate volunteer participation||· Track and increase number of volunteers engaged by event.
· Track and Increase of new members joining the website
· Track and Increase Facebook community interactions
· Increase in average length of volunteer involvement in P2P
· Increase in volunteer satisfaction/feeling supported (measured via survey.)
· Increase proportion of volunteers outside of Vancouver area.
· Volunteer stories captured and shared.
*Follow up needed with Alana/Isabelle/Jen
|Evaluate our current volunteer participation, retention, needs and connection|
|Develop and implement a Volunteer Retention Strategy to keep our volunteers active
– Pathways of involvement, growth and support
– What other opportunities are available at RDF
– Volunteer resources and support
|2) Communicate our stories more effectively|
|Implement our marketing & communication plan and build internal capacity to support execution of the plan.||· Implementation of the 1 year and 3 year communication plan
· Increase in reach and engagement as measured via website/ social media analytics
· Increase in # of members joining website
· Increase targeted communication by geographic region
· # of stories told tracked by social media/story
|Develop a method to share stories- individual, parent, adult, researcher.|
|Communicating key messages and key successes online from our research (access to information, marketing for fundraising, etc)|
|3) Develop efficient and robust infrastructure to support National expansion of RDF|
|Strategic Board Growth; Grow the board to include more diverse representation as well as adults in rare disease community (not just parents) ideally matched with skill sets we need for the board||· Increase in diversity on board, committees, and network (ex: regional, gender, minority, adults with RD)
· Three-year board/staff team building retreat held.
· Completion of exit interviews with all key volunteers, board members and staff leaving the organization
· Increase in organizational outreach to other chapters, P2P, RD organizations
· Increase in # of opportunities for voting member participation.
|Improve internal board culture, by focus on team building, decision making and clear role definition|
|Develop Voting Member Engagement Strategy|
|4) Evaluate and enhance our member’s sharing and support experience|
|Understand the different pathways of those we serve by carrying out a robust evaluation of current P2P programs and program delivery and implement recommendations||· Increase in adoption of online group meetings (through technology platforms)
· Increase in families able to access support closer to home (through survey)
· # of families that are applying for family counselling program
· Launch of inaugural P2P leadership summit program
· Bill, Chris, Alana (?) –anyone else? to discuss these measures offline
|Explore and implement new and novel ways of delivering groups|
|Improve access to p2p groups through virtual and webcast technology|
|Develop in depth volunteer and family resources to support retention in program|
|Develop a new level of Leadership (including group leaders) in our members through workshops/ leadership support|
|5 ) Develop consistent, reliable, scalable and funding streams for our programs, research and operations|
|Operationalize addition of Outrun Rare developing clarity on Governance, Decision making, Shared vision, Resources, Communication||· Increase in new donors engaged
· Increase retention of past donors
· % of new donors outside of Vancouver area
· Increase in fundraising and sponsorship $$
· Growing outrun rare to 1 more sport (in next three years)
|Develop fundraising focus and infrastructure in markets/areas outside of Vancouver area.|
|Develop donor pipeline outside of Rare Disease Community|
|Build Endowment through NEW large donors and corporate donors