1. What’s our focus?
Euro-HSP

2. What’s the point? Let’s make it, and keep it, simple
We might think of three areas to zoom in on:
Best Practices guide
Fundraising scheme (crowdfunding, kickstarter, pharma co’s)
Lobbying
Registries

3. Why an action plan?
To lend credibility to Euro-HSP. An action plan shows others (including grantmakers) that Euro-HSP is well-ordered and dedicated to getting things done. To be sure we don't overlook any of the details To understand what is and isn't possible for Euro-HSP to do For efficiency: to save time, energy, and resources in the long run For accountability: To increase the chances that members will do what needs to be done

4. Revision and constant feedback loop
What stRATEGY TO USE?
Again, simple
It’s gonna be people-centric
how can we support them?
Revision and constant feedback loop

5. "In preparing for battle I have always found that plans are useless, but planning is indispensable"
Dwight D Eisenhower

6. WHAT IS an action plan? Monitor progress step-by-step
Basis for figuring out time needed and time spent
Less sidetracking
Forms a team, a bond (defines individual roles)

7. A written action plan
What do we want to achieve? What are the targets? Roles – training, resources, problems Milestones check-in or report every three months, incl. to change Publicity, dissemination, next steps VMOSA (Vision, Mission, Objectives, Strategies, Action Plans) model

8. Fundraising scheme (crowdfunding, kickstarter, pharma co’s)
Target/Goals
Best Practices guide
Fundraising scheme (crowdfunding, kickstarter, pharma co’s)
Lobbying
Registries

9. Execution
Ownership: one person must be responsible and accountable for tracing the progress, keeping team informed, ensuring timely action steps are occurring and adjusting the actions. (prioritisation…) Action steps should be clear and actionable versus vague ideas or thoughts. (brainstorming…) Responsibility: each action step needs to have one person responsible. (delegation…) Support: For each action step, determine who will support the person responsible. This can be multiple people. The key is that they’re supporting the action or outcome. (delegation…)

10. EXECUTION
Informed: keeping people in the communication loop for each action is critically important. People might need to understand the state of progress around your actions to see how they affect other actions and objectives (communication, Did we learn? Do we need to revise?...). Metrics and budget: each action step must have a metric that tells us that the action is complete. For example, if you needed to survey members and don’t have the resources to run the survey or want to protect anonymity, using an outside resource will require money not included in original operating budget. (what resources are needed?... Space, cash, helpers, equipment, materials, expertise, systems…) Milestone date: date the action step needs to begin Completion date

11. All rights reserved.

12. Best Practices
What is HSP? How is HSP diagnosed? What are the symptoms? How severe will they get? Why are my symptoms different from others in my family? What genetic testing is available? Is the life expectancy diferent? What is the treatment? Other Questions
Also, clinical practice guidelines? ranging from diagnostic tests and treatments to organization of care to help professionals, patients, policy makers access the best and most up to date information; influence clinical research agenda; then, re-evaluation

13. Road map…

15. From 2015
An action plan will consist of Goals Action steps (1,2,3,4,5.) Support Network Obstacles Adjustment Outcomes (should we work with some professionals?) Collaborating globally (from 2015)?

16. How to implement?
Regular phone calls, teleconferences, updates Is there a winter date we can meet only for work? (Not for elections, etc)