Toolkit #2: Why Should I Become An Advocate?

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

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

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

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 emails to local and state offices about important bills Advocates schedule and attend meetings Advocates participate in fundraisers Advocates create awareness for rare diseases

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

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!

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

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