What is FOP Advocacy?

Advocacy involves individuals who are committed to influence positive change in their lives, communities and elected governments by making their personal stories and opinions known. They seek these changes by getting involved and taking action in order to make a difference in the lives of those afflicted with FOP and their families. Getting involved in advocating for the IFOPA may mean taking any of the following actions in contacting your local, state or federal government representatives:

  • Making telephone calls
  • Writing letters
  • Sending emails
  • Visiting your elected representatives in Washington, DC, or in your home state

As an advocate, you represent all patients with FOP. Because you are a constituent and a registered voter in your legislator's home district and state, your opinions are important to them!

You can also help by spreading the word in other ways. Tell a friend about the work of IFOPA or contact your local media. To find your local newspaper, television and radio stations, visit www.usnpl.com. Attend an awareness event or host one of your own. 

Donating to the IFOPA, as well as hosting or attending a fundraising event, are other ways you can help IFOPA sponsor research and educate people about FOP. Donations can be sent to IFOPA, 1520 Clay St. Ste. H-2, North Kansas City, MO 64116 USA or made through our online portal

Special website purchases, such as those through Amazon.com or iGive.com, give IFOPA special referral fees. Buying a gift from the IFOPA store is another way to help unlock the cure to FOP by educating others and supporting the organization. 

We also rely on volunteers to help us with our education and advocacy work, as well as assist with a variety of other operational and leadership roles. Consider volunteering and serving with IFOPA if your time allows.  


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