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Welcome to Patient Congress 2018!

We made it! Some final logistics and DC how-to for you:

On Thursday you’ll have to get lunch solo (or with fellow participants) and we’ll reimburse you. Here’s a list of some places near the House and Senate office buildings to try: Places to Eat on the Hill

New to Uber or Lyft? Instructions here for both:



Social Media Tool kit

Our voices will be amplifying even further if you post about them on Facebook and Twitter! The full social media tool kit can be found at this link, along with sample tweets and Facebook posts, but the quick overview is below.



STAFF HANDLES: @Gwen_Darien @RebeccaKirch @ByCaitlinD @ByMLW @killthebeast @SheStickel

EVENT HASHTAG: #PatientVoices

LEGISLATIVE HASHTAGS:  #PCHETA #preexistingconditions #medicaldebt #surprisebills


Don’t forget: PAF & NPAF maintain separate Facebook pages. Please “like” both our pages and if you’d like, also join our Group page, Patient Voice Network. You can find it through the NPAF page.

We will post pictures and videos not only during the event, but in the weeks to come, so please visit and share often!

One of the easiest and most personal things you can do is share your story on your Facebook page. Try it out after you speak on Thursday! If you do post about your experience, make sure to tag us in the post — @npaforg and @patientadvocatefoundation


EVENT HASHTAG: #PatientVoices

LEGISLATIVE HASHTAGS: #PCHETA, #palliativecare, #preexistingconditions


Listen to Webinar #3!

You can listen to a recording of the policy webinar here.

And make sure to look over the webinar slides here.


Draft agenda available

You can take a look right here.


Please let us know if you want to participate in the StorySlam or stay in the audience.


Webinar #2

You can hear a recording of Webinar #2 here. Major takeaways: contact your mentor, send in any visual aids (like photos) and opt-in (or out) of StorySlam ASAP.

Webinar #1

You can hear a recording of the 2pm webinar here. (Please note that the audio for the planned video didn’t work for the webinar; we highly recommend watching the first video below, “How my son’s short life made a lasting difference,” before reviewing the webinar.)

Check out the PowerPoint presentation here for story prompts, a to-do list and other helpful hints.


1) What is the time range for our story presentation?

3 minutes is a good goal — we can do a little over but there will be a hard stop at 5 minutes.

2) What is the goal or focus of our stories (ie, the problem, the resolution, a specific treatment, etc)

Whatever you want it to be! Obviously health/patient/caregiver related, but it doesn’t need to be related to the legislative meetings you’ll be having later. Again, we highly suggest looking at the stories on the website to get an idea of all the different ways you can go.

3) Is there anything more we are supposed to be helping each other with, other than putting together a compelling story for each of us?

Putting together a story is pretty important! I would say a phone call could go with you each taking a turn telling the story and the other giving criticism and suggestions (far better than empty praise) – and frankly, the other point is to keep each other honest as far as actually working on the story and not waiting until the last minute

4) What is our time frame for having our stories together (end of next week, before Labor Day?)? Obviously you should be ready to go by the day before the event! We suggest knowing what you want your approach to be (funny, serious, a mix, etc.), along with the points you want to hit and the story’s timeline before the end of August, and then work through September on getting to the right amount of time, making it not-boring and being able to do it without notes.

So, far example, by the end of August you would know:

Opening line/introduction of characters

Scene 1

Statement of problem/fear/barrier

Scene 2

Scene 3

Conclusion/resolution/statement of transcendent wisdom

Your story may look different from this — it’s only an example– but go ahead and use it to get started!

The month of September would be working on phrasing, getting timing down, figuring out what works for the audience and practice, practice, practice.









Participants, don’t forget to get your Travel forms in to the PAF Travel Desk! The forms can be found by clicking on the below links:

Travel Request Form

Travel Scholarship Terms and Conditions

After completing the forms, please email them to