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Advocacy in the Narcolepsy Community

Carrie OstreaRare Parent, Ostrea Consulting, LLCRare Disease Nonprofit Workshop

Few people jump into Rare Disease Advocacy because it’s their passion...

They do it in order to survive.

What comes to mindwhen you think of

“Advocacy”?

Healthcare Workplace

Education Support

Situations where Advocacy is Needed

What does the general publicthink Narcolepsy is?

Perception vs. Reality

What stigmas are associated with Narcolepsy?

What is the reality of living with Narcolepsy?

Perception vs. Reality

General PublicWorkplace Associates

School Teachers and Administrators

If you only had 30 seconds to explainthe importance of Narcolepsy awareness,

research, and/or funding to a very influential person or group,

what would you say?

Explaining Reality

• Make a connection• Inspire change• Challenge assumptions• Be heard• Expose realities• Stand out• Self-discovery

Importance of Storytelling

“Stories engage people at every level - not just in their minds but in their emotions, values and imaginations, which are the drivers of real change. So if we want to transform society, we must learn to tell - and listen to - a new set of stories about the world we want to create.” Simon Hodges

RULES:• Three minutes or less• Empathy versus sympathy• Create outline (not script)• Conclude with an ‘ask’

PRACTICE:• With a timer• Video yourself• Ask for feedback from friends• Church/temple, community groups (Kiwanis, Rotary).

Importance of Storytelling

Five Types of Rare Advocacy

LegislativeAwarenessSupportEducationResearch

Five Types of Rare Advocacy

LASERFind Your Passion!

Legislative

Scientific andClinical Research

Family SupportGeneral Awareness

Healthcare Professional Education

1. Legislative

2. Non-Profit

4. Local Support Group

3. Community Event

5. Friend / Family Member

Types of Advocacy by Reach

1. Legislative

2. Non-Profit

4. Local Support Group

3. Community Event

5. Friend / Family Member

Types of Advocacy by Reach

It takes justONE person to

start a movement!

1. Legislative

2. Non-Profit

4. Local Support Group

3. Community Event

5. Friend / Family Member

Types of Advocacy by Reach

It takes justONE person to

start a movement!

Larger outreach does not alwaysequal the power of the advocacy!

From:Sprocket Communications

30-second Elevator Speech