This will be our 3 rd year on Capitol Hill During Rare Disease Day - - PowerPoint PPT Presentation

This will be our 3rd year on Capitol Hill During Rare

Disease Day week!

Every year it keeps growing with more advocates &

more events

This power-point provides some logistical

information to help you prepare for your trip but you will receive more information when you arrive!

The hotel & all the events are on the Red Metro

Line to make it easy for you to get around but they are in different locations to allow you to have a chance to experience our Capitol City

No worries…

• You will be with others who have done this before
• All you need to know is your personal story on how a rare

disease has affected your family

• Members of Congress do not expect you to be a policy expert

Learn about issues Tuesday at the conference

• Decide what issues are most important to you
• Meet with other advocates from your region to discuss your plan
• Wed. Hill meetings are being scheduled for you
• Final details, training, & questions at required breakfast on Wed.

Thursday

• Multiple events happening –

make sure you register Separately for these!

Introductions

• About RDLA
• Who’

s attending

Travel Arrangements Tuesday: Legislative Conference

• Draft Agenda
• Cocktail Reception & Documentary Screening

Wednesday: Lobby Day

• Soapbox Scheduling

Thursday: Congressional Caucus Briefing

• Patient Advocacy Workshop
• Global Genes Networking Reception

Friday: Rare Disease Day @ NIH Q&A

Designed to be a clearinghouse & advocacy

center for all Rare Disease Legislation

Provides resources & tools for individuals &

• rganizations

All events & resources are free & open to the

entire Rare Disease Community

Program of the EveryLife Foundation for Rare

Diseases (501c3 public charity) www.RareAdvocates.org

Regular meetings/calls to discuss pending

legislation

• Agenda is open for all organizations to contribute

Helps coordinate the Rare Disease

Congressional Caucus

Lobby Day

• 1st Lobby Day in 2012 - 70 Advocates on the Hill

Supporting the ULTRA/FAST Legislation & Creating Hope Act – both were included in FDASIA

• 2nd Lobby Day in 2013 – 150 Advocates on the Hill

150 Patient Advocates Registered 20 Industry Representatives joining us for the

Conference

More than 70 different patient

• rganizations/diseases represented

Thank you to our Industry Sponsors:

We will be running a full page ad in Politico

during the Lobby Day

All Patients Organizations represented will be

listed on the ad

Please double check to make sure your

• rganization is listed correctly!

• Addi & Cassi Fund
• Addison’s disease
• ALS Assn.
• AMEND USA-Asso. for Multiple Endocrine Neoplasia Disorders
• APFED
• Auto Inflammatory Alliance – CAPS
• Batten Disease Support & Research Assn.
• Beckwith Wiedemann Children’s Foundation
• Bellwether Patient Advocacy
• Ben's Friends
• Bladder Cancer Advocacy Network
• CADASIL Association
• Caleb's Crusade Against Childhood Cancer
• CurePSP - The Foundation for CBD and Related Brain Diseases
• Congenital Disorders of Glycosylation Family Network
• Chase the Cure for Niemann Pick Type C
• Childhood Cancer Advocate
• Cure AHC, Cure JM Foundation
• Dercums Foundation
• Desmoid Tumor Research Foundation
• Ehlers-Danols Syndrome
• EmesArmy
• Fabry Awareness USA
• Foundation for PSP
• Families of Spinal Muscular Atrophy
• Fibromuscular Dysplasia Society of America
• FMD Chat
• Fragile Skin Foundation
• Gist Cancer Awareness Foundation
• Gene Spotlight Inc.
• Global Genes|RARE Project
• Gold Rush Cure Foundation
• Hope 4 Hunter
• Hope 4 Tyler and Luke

International Pemphigus and Pemphigoid Foundation Interstitial Lung Disease International Society for Mannosidosis & Related Diseases International Waldenstrom's Macroglobulinemia Foundation Jett Foundation Jonah's Just Begun Joshua Frase Foundation Kids v Cancer Let Them Be Little X2 Lennox-Gastaut Syndrome foundation Lipodystrophy United Little Miss Hannah Foundation M.O.M.'s & D.A.D.'s Against Fabry! Minnesota State Childhood Cancer Coalition MLD Foundation Myocarditis Foundation Myotonic Dystrophy Foundation National Gaucher Foundation National MPS Society National PKU Alliance National Patient Advocate Foundation Neonatal-Onset Multisystem Inflammatory Disease Alliance Noah’s Hope Pancreatic Neuroendocrine Tumor Cancer Patients for Clinical Research Pediatric Hydrocephalus Foundation Inc. Phelan-McDermid Syndrome Foundation Pseudohypoaldosteronism Foundation Pulmonary Fibrosis Foundation Rasopathies Network USA - NJ Rare Spontaneous Coronary Artery Dissection Sarcoma Foundation of America SSADH Association Sweet's Syndrome Awareness Talk Health with Jamie Inc. Taylor's Tale The IHope Foundation: Intracranial Hypertension The Lam Foundation The Sturge-Weber Foundation Timothy Syndrome U.R. Our Hope Williams Syndrome Family of Hope Zeqing for a Cure

Mon Tues Wed Thurs Fri Sat

Comfortable Shoes Umbrella Prepare for warm & cold weather Dress Professionally for Lobby Day Hill

Meetings (wear comfortable shoes, there is a good deal of walking to meetings)

Wear Jeans to support the Global Genes Project

• Tuesday Legislative Conference
• Friday’

s NIH events

• Deadline to register for the $179 discounted rate:

FEBRUARY 7th

• 5 min walk from Dupont Circle Metro
• Free wireless Internet access
• Check in is at 3 p.m., check out is at 12 noon
• Please make sure to contact the hotel directly if you need

ADA Compliant Room Car Parking Early or Late Check In/Out

2015 Massachusetts Ave NW, Washington, DC 20036 Phone:(202) 265-1600

Advocates must attend the Legislative

Conference to receive their travel Stipend

Travel stipends will be given out at the

Legislative Conference Registration

• Advocates must present photo ID, provide a

Social Security Number & sign for the check

Stipends can be used for any travel expenses:

hotel, food, airfare, gas, parking, etc.

Currently a waitlist for stipends –

additional stipends will be granted on Thursday Feb 6th

• Only one/family & one organization/state

National Press Club 8:15-9:00am registration & continental breakfast Starting promptly at 9:00am Box lunch & afternoon snack included You must attend the Conference to attend the

Lobby Day

• Receive Hill meeting schedule, issue training

& talking points

Ends at 4:30pm

• 529 14th Street NW - Near the White House & Metro Center Station
• From Dupont Circle Metro take the Red Line towards Silverspring 2 stops to Metro Station
• $2.70 each way (4 minutes on Metro plus 6 minutes walking)
• Taxis are also available, Address is: 529 14th St NW

9:00 Welcome & Overview of the Day 9:10 State Level Organization & Advocacy Efforts

• Affordable Care Act (ACA) implementation & Newborn Screening

11:25 Midterm Elections 12:05 Lunch Break 12:30 Keynote: Art Estopian, Chief of Staff, Office

• f Rep. Ros-Lehtinen, Parent Advocate

1:10 Patient Organization & Industry Stakeholders

Who Influence Legislation

3:15 Legislation Breakout session 3:45 Overview of Lobby Day Schedules

Carnegie Institution of Science Event is free to attend 5:30-9:30pm: food & drinks 7:00pm: movie screening 8:30-9:30pm: panel discussion Sponsored by

RareAdvocates.org/rdday-cocktail-reception/

1530 P Street Northwest Use P Street Entrance on 1st floor 10 minute walk from Dupont Circle Metro

Top of the Hill - Reserve Officers Association

• 1 Constitution Ave NE Washington, DC 20002

7:00 am Breakfast buffet open 7:30 am Lobby training begins Meetings scheduled from 9:00a.m.- 5:00 p.m.

• Dress professionally
• Wear comfortable shoes

1 Constitution Ave NE Washington, DC 20002 Take the Red Line to Union Station then walk south towards the Capitol (down 1st ST. NE) to Constitution Ave. NE

Union Station

Meetings will be with Members of Congress and/or

Congressional Staff

Meetings will be no more than 20 minutes long Please arrive no more than 10 minutes early for your

meeting

RDLA will set up a table in the Rayburn House Office

Building Cafeteria in the Basement – feel free to join us between meetings

It takes about 10-20 minutes to walk from the Senate

side to the House side for meetings

Cabs are easy to get –

however they still take at least 10 minutes & cost $8-$10

Remember you are an expert in your disease & that is

all that matters!

Pictures of your family or loved one affected by

rare disease

RDLA will be preparing one-sheets to leave

behind on the Congressional Caucus & on specific legislative issues

Global Genes will be providing ribbons for you to

give out during your meetings

If you would like to leave behind information on

your disease or organization for your Member of Congress, make sure that it fits neatly on the front

• f one page

Soapbox is scheduling meetings on your behalf You will be grouped in regional teams with other

advocates for your meetings

You will receive your schedules during the

Legislative Conference

There is an app for you to download on your smart

phone that has your schedule & biographies for the Member of Congress

Please be available for Hill Meetings until 6:00 p.m.

Help ensure that every Member of

Congress knows that there is a rare disease patient in their district

Join the State Delegation Hill

Meetings & be a voice for other patients in your State

Advocates drop by Congressional

Offices on behalf of other patients who are unable to join us in DC

Tell your fellow advocates to submit

their stories to: https://globalgenes.org/rare-disease- day-events-in-washington-d-c/

8:00am -10:30am Breakfast provided

Greek Embassy: 2217 Massachusetts Ave NW Best practices to work with Industry & FDA on expanded

access, compassionate use & emergency IND’ s

EveryLifeFoundation.org/events/2014_fda_patient_advocacy_workshop/

Embassy Row Hotel

The Science Behind Rare Disease Policy

@ The U.S. Capitol Visitors Center – Room HVC 201 11:30 am – 1:00 pm (Lunch will be provided) The Capitol Visitor Center, the new main entrance to the U.S. Capitol, is located beneath the East Front plaza of the U.S. Capitol at First Street and East Capitol Street.

RareAdvocates.org/feb-27th-caucus-briefing/

5:00-8:00 PM Darlington House - 1610 20th St NW Come Relax and Socialize with your rare disease colleagues ** This location is not easily wheelchair accessible

To RSVP contact: Carrie Ostrea @ carrieo@rareproject.org (949) 248-RARE x110

Embassy Row Hotel

9000 Rockville Pike Bethesda, MD Masur Auditorium (Building 10) Friday 8:30 a.m. to 5:00 p.m. The event will also be available via webcast Attendance is free and open to the public The event features tours, presentations, posters and

exhibits from the rare diseases research community.

The NIH is a short walk from the Metro Medical

Center station

https://events-support.com/events/NIH_Rare_Disease_Day_2014

*Please allow approximately 30 minutes for passing

through NIH security. All visitors will be required to show valid government-issued identification to access the NIH campus

We know there is a lot going on during the week

& it’s time consuming to register for each event separately

But we also know that you appreciate FREE events The separate events, webpages & registration

process allows us to secure support from Sponsors to keep all of our events FREE!

We will be working with our programmers to see

if there is a better way to streamline registration for next years events

Thanks for your understanding!

Tuesday - Thursday:

• Legislative Conference & Hill Days
• rareadvocates.org/lobby-day/

Tuesday:

• Reception and Life According to Sam Screening
• RareAdvocates.org/rdday-cocktail-reception/

Thursday:

EveryLife Foundation Workshop on FDA Law & Policy

• EveryLifeFoundation.org/events/2014_fda_patient_advocacy_workshop/

Rare Disease Caucus Briefing

• RareAdvocates.org/feb-27th-caucus-briefing/

Global Genes Rare Disease Networking Reception

• RSVP with Carrie Ostrea: carrieo@rareproject.org (949) 248-RARE x110

Friday:

Rare Disease Day at the NIH

• https://events-support.com/events/NIH_Rare_Disease_Day_2014

Feel Free to contact us!

Julia Jenkins

Julia@RareAdvocates.org

Andy Russell

ARussel@EveryLifeFoundation.org

Check for Latest updates on

www.RareAdvocates.org

Join us our Facebook event for updated event

information & meet other advocates before you arrive! http://on.fb.me/1e4kjzF

Practice bi-partisanship – party does not

matter when it comes to rare diseases

Practice your 2 minute “pitch” on your

personal story

Contact RDLA if you have relationships with

your Member of Congress or have questions about a specific meeting

They will have more info for you when you

arrive – but they provided the following slides!

United States Senate 2 45 53

Democrats Republicans Independents

United States House

• f Representatives

200 233

Republicans Democrats

113th U.S. Congress

• All participants will meet with the office of their House

Representative and both Senate offices (and typically with a few other offices in the state). Participants are scheduled in small groups with other families.

• To minimize confusion and maximize accuracy, please do not

contact the legislative offices directly regarding your appointments.

• If you have not “lobbied” before, do not worry. We will provide

a full issue briefing and plenty of training and materials before you go to Capitol Hill.

• Everyone who will be participating in congressional meetings

should plan to attend the Legislative Conference & Lobby Training Breakfast. We will outline our current requests, distribute congressional schedules, and introduce you to others from your state who will be participating in your Capitol Hill meetings.

• Because we only have a small window of opportunity for our

congressional appointments, it is helpful if you make every attempt to stay in Washington, DC, for the full business day.

• Because congressional appointments can and do change up

until the last minute, final schedules will not be available until the day before or the day of the event.

• Thank you for your participation and cooperation. We look

forward to seeing you in Washington, DC.

• (Additional questions can be sent to kush@soapboxconsulting.com)


Congressional Meeting Schedules

✓HOOK: Your introduction (make it local!)

• ✓LINE: One Stat / one Story / or one talking point


✓SINKER: Our unified request (be able to state it clearly)

• (Homework: What is your two-minute story?)


Hook, Line, & Sinker: The Parts of a Legislative Meeting

• Keep your conversation focused on our unified topic(s).

• Remain flexible and friendly. (It is a dynamic

environment.)


• Show appreciation for staff. (They can be helpful from

inside the office.)


• Leave any partisan politics at the door. (Treat both

parties with equal respect.)


• Do not expect miraculous conversions. (Coming back

pays dividends over time.)


• If you don’t know the answer to a question, simply say

so (and note the specific question on your feedback.)


• Conclude the meeting with a clear restatement of our

unified request.


• Send us feedback (sooner rather than later) and any

photos of the meeting (via the App.)


• If you need any assistance on the Hill, please call the

Help Desk (especially if your group cannot make it to a scheduled meeting.)


9 Final Meeting Tips