1. Toolkit #2: Why Should I Become An Advocate?

3. What is an advocate?
An advocate is a person who uses their voice to raise awareness or push for a change
You do not need to have any specific experience
Advocates have a powerful voice when standing together
Advocates can weigh in on policy matters regardless of multiple factors
If and/or who you voted for
If you receive government services
If you donate money to campaigns

4. Why is Advocacy Important?
Believe it or not, policymakers want to help the people they serve. They can’t do this without hearing from you
Change cannot occur without the support of the people:
Advocates represent others
Advocates offer support
Advocates rally for change
Advocates educate others

5. There is a superhero inside all of us.
We just need the courage to put on the cape.

6. What do advocates do?
Advocates come in all forms and you do not have to do anything extreme to fulfill this purpose
Advocates write letters to elected officials
Advocates make phone calls to voters
Advocates send s to local and state offices about important bills
Advocates schedule and attend meetings
Advocates participate in fundraisers
Advocates create awareness for rare diseases

7. Is public policy the only way to advocate?
“Policy” doesn’t just mean pubic legislation or regulation:
Curriculum in schools
Hospital and medical procedures
Awareness in the workplace
Access for disabled persons

8. How do I become an advocate?
Think about what you want to change:
Who am I advocating for?
Am I or someone I know affected by the health care problem?
You may not be affected by any particular issue and that’s okay too!
Research organization groups and get involved
Participate in awareness campaigns and legislative meetings
Join Rare Action!

9. How to get involved Sign up for Rare Action (RareAction.org)
Participate in a Rare Disease Day event
Join Running for Rare (Running4Rare.org)
Get active on social media
@rareaction
Facebook.com/NationalOrganizationforRareDisorders

10. www.rarediseases.org www.rareaction.org @rarediseases @rareaction
Thank You