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This will be our 4th year on Capitol Hill During Rare Disease Day week!
Every year it keeps growing with more advocates & more events
This presentation 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 is to know 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 Lobby Day breakfast on Wed.
Introductions◦ About RDLA◦ Who’s attending
Travel Arrangements◦ What to bring/wear◦ Where to be
Monday: Documentary Screening Tuesday: Legislative Conference Wednesday: Lobby Day◦ Meeting tips◦ What to bring◦ Asks◦ Advocacy Associates
Thursday: Congressional Caucus Briefing Thursday: RareArtist Friday: Rare Disease Day @ NIH Q&A
Designed to be a clearinghouse & advocacy center for all Rare Disease Legislation
Provides resources & tools for individuals & organizations
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
200 Rare Disease Advocates Registered
20 Industry Representatives joining us for the Conference
More than 100 different patient organizations/diseases represented
Thank you to our Sponsors:
We will be running a full page ad in Politico during Lobby Day
All Patients Organizations listed on the next slide will be listed on the ad
Please double check to make sure your organization is listed correctly!
A Day in our Shoes
Addison's disease
Al Azher University
Alagille Syndrome Alliance
American Behcet's Disease Association
Amyloidosis Foundation
Angels4Patients
ARPKD
Autosomal Recessive Polycystic Kidney Disease
Batten Disease Support and Research Assoc.
BDSRA - NCL (Batten) Disease
Beckwith Weidemann Children's Foundation International
Behcets Disease
BRBN Alliance
Bring Light to BBS/ Bardet Biedl Syndrome
Caleb's Crusade/Childhood Cancer
Chase the Cure
Cindy's Rainbow
Congenital Hyperinsulinism International
Cure AHC
Cure JM Foundation
CADASIL Association
Curing Retinal Blindness Foundation
CUSHNIG'S
Dante's Hope
Deerfield Institute
dercumsfoundation.org
Desmoid Tumor Research Foundation
Duchenne Awareness/Eteplirsen
Ehlers Danlos National Foundation
Emily's Fight
Fight ALD
Foundation for Ichthyosis & Related Skin Types
Foundation for Sarcoidosis Research
Gaucher 2/3
Gaucher type 3 patient/ GT23 FOUNDATION
GBS/ CIDP FOUNDATION NEPAL
Giant Axonal Neuropathy
Global Genes
GT23 Foundation/ Gaucher Disease types 2 & 3
HDSA
Health and Medicine Counsel of Washington
Hope 4 Hunter / MPS II
Hope4TylerandLuke/ Med23 Awareness
Huntington's Disease Society of America (HDSA)
ICAN, International Cancer Advocacy Network
International Pemphigus and Pemphigoid
Foundation
ISMRD.org
Jett Foundation/ duchenne md
Jewish Federation of Metropolitan Chicago
Joshua Frase Foundation / Myotubular Myopathy
Kids v Cancer
Let Them be Little Foundation
Little Miss Hannah Foundation
Lipedema, Lymphedema Ehlers Danlos
Lipodystrophy United
MDA
Mitochondrial Disease
MLD Foundation
MPS society
Myocarditis Foundation
Myotonic Dystrophy Foundation
National Center for Health Research
National LeioMyoSarcoma Foundation
National MPS Society
NECPAD/PKU
Noah's Hope - Batten DiseaseParent Project Muscular Dystrophy
Pediatric Hydrocephalus Foundation, Inc.
Pediatric Justice Assoc
Phelan McDermid Syndrome Foundation
PKD Foundation
PTEN Hamartoma Tumor Syndrome Foundation
Pulmonary Hypertension Association
Rare and undiagnosed network
Rare Disease United Foundation
RareCandace.com
RASopathies Network USA
RDR
Relapsing Polychondritis Awareness and Support
Foundation, Inc
reThink Arch
sarcoidosis
Sarcoidosis of Long Island
Sarcoidosis of Nashville
Sarcoma Foundation of America
SCAD Alliance (spontaneous coronary artery dissection)
SCID ADA
SMA Support System
Sobi inc
Space2Thrive
Spinal Muscular Atrophy (SMA) Foundation
SSADH Association
St. Baldrick's Foundation/Alliance for Childhood Cancer
Talk Health with Jamie, Inc.
Taylor's Tale
The ALS Association
Timothy Syndrome
U.R. Our Hope
Uplifting Athletes
Wake Up Narcolepsy, Inc.
Williams Syndrome Family of HopeZeqing for a cure
Organizations participating in Rare Disease Week on Capitol Hill 2015
Comfortable Shoes
Umbrella
Prepare for 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
The attire for Lobby day is business-casual, with emphasis more on the business than the casual.
I would think about what you would wear to a nice job interview or to church
To the Capitol
Carnegie Institution of Science
This is a widely attended public
event. There is not cost to attend.
5:30-9:30pm: food & drinks*
7:00pm: movie screening
8:30-9:30pm: panel discussion◦ Featuring Dr. Gahl
Sponsored by
*The Darlington House will be providing Hors d'Oeuvres including smoked salmon, cheeses, handmade pasta and beer & wine.
1530 P Street Northwest
Use P Street Entrance on 1st floor
10-15 minute walk from Dupont Circle Metro
Address: 1825 Connecticut Avenue Northwest #2, Washington, DC 20009
8:30 am - 9:15 am registration & breakfast Conference starts at 9:15am
Breakfast, lunch & afternoon snack included!
You will Receive Hill meeting schedule, issue training & talking points, and skill training.
You must attend the Conference to attend the Lobby Day
9:30 Overview of the 114th Congress
10:10 Know Your Lobbying Rights
10:40 Avenues for Impact
11:40 Lunch Break
12:10 21st Century Cures Initiative
1:30 Prepping for your Hill Meetings
2:10 Break
2:40 Breakout Skill Training Workshops
3:40 State/Regional Breakout Session
5:00 End
Women’s Democratic Club◦ 1526 New Hampshire Ave NW, Washington, DC 20036
7:00 am Breakfast begins
7:20 am Training and Keynote
Meetings scheduled from 9:00 a.m.- 5:00 p.m.
◦ 1526 New Hampshire Ave NW, Washington, DC 20036
Meetings will be with Members of Congress and/or Congressional Staff
Meetings will be no more than 25 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 story and your disease & that is all that matters!
Practice your 2 minute “pitch” on your personal story
A clear concise actionable “ASK” is a must
Practice bi-partisanship – party does not matter when it comes to rare diseases
Become comfortable with your group, and be respectful of group dynamics
Contact RDLA if you have relationships with your Member of Congress or have questions about a specific meeting
Get acquainted with your members of Congress. We will include your member’s bios in your State Packet as well as in Advocacy Associates app.
Tips:
Look at their Congressional Scorecard and see where they stand on Rare Disease Issues: Rareadvocates.org/scorecard
Be respectful of their party affiliation, and aware of the fact that funding issues may go against their political ideology
Pay attention to what they are doing in the media; what are they saying, what do they care about?
Look for things that you may have in common. For example, Rep. Marino from Penn. has a daughter with a rare disease and is the Chair of the Cystic Fibrosis Caucus
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
Congressional Report Card
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 of one page
Orphan Product Extensions Now Accelerating Cures & Treatments was introduced with 3 bipartisan co-sponsors including Reps. Bilirakis (R-FL) and Butterfield (D-NC). The Act provides a six-month extension of exclusivity forcompanies to re-purpose drugs for rare diseases or “Rare-purpose” drugs.
The EveryLife Foundation along with 135 patient organizations have endorsed the OPEN ACT.
The Compassionate Use Reform & Enhancement Act was introduced by Rep. Michael McCaul (R-TX), a co-chair of the Childhood Cancer Caucus, with bipartisan support from co-sponsors Reps. Butterfield (D-NC), Burgess (R-TX),Matsui (D-CA), and Lance (R-NJ).
The bill aims to create clear guidance on industry and FDA policies to help facilitate patient access to experimental orunapproved drugs.
The Dormant Therapies Act, originally called the MODDERN Cures Act, has received bi-partisan and bicameral (House & Senate) support, with sponsorship from Rep. Leonard Lance (R-NJ-7) and Sens. Orrin Hatch (R-UT)and Michael Bennett (D-CO).
The National Health Council (NHC) has been the leading patient group supporting the legislation.
The Act creates new patent protection for potential therapies that companies will not currently develop because they do not have patent protection to make them profitable.
The bipartisan Advancing Research for Neurological Diseases Act of 2015 was re-introduced by Reps. Michael Burgess (R-TX) and Chris Van Hollen(D-MD)
It would create a national data collection system for neurological diseases, including Parkinson’s disease and multiple sclerosis, along with other diseases at the Centers for Disease Control (CDC). The system will collect information on the incidence and prevalence of neurological diseases and provide a foundation for evaluating and understanding many factors such as geographic clusters of diagnoses, variances in the gender ratio, disease burden, and changes in healthcare practices.
The bill’s advocacy efforts are being led by the Parkinson’s Action Network and the National MS Society.
Join the Rare Disease Congressional Caucus
The bipartisan Rare Disease Congressional Caucus is lead by Representatives Leonard Lance (R-NJ) and Joseph Crowley (D-NY) to promote awareness of Rare Disease issues.
Our goal for the Caucus is to grow House membership and formalize the Caucus in the Senate.
ASK:
Topics
• Advocacy Associates scheduling process
• Structure of your schedule
• Schedule distribution
• AdvocacyDay App
Congressional Schedules for
Rare Disease Week
• Constituency-based meetings• Based on your primary address
• You will be grouped into teams for visits• Based on geographical location
• Prioritize meetings with legislators
• Time-frame: 9 am – 5 pm on Wednesday, Feb. 25th
• Constituent Coffees
• Let us know about timing conflicts
Schedule Distribution
• We will be on-site the afternoon of Feb. 24th and the morning of Feb. 25th
• We will provide printed meeting itineraries• Office• Time• Location• Meeting With• Advocates in meeting• Map of Capitol Hill• Office Number
• We will call you with any meeting changes
AdvocacyDay App - Schedules
• View full meeting schedule• Time, location, who
meeting is with, other participants
• Push notifications for meeting changes
• We will also call you
• App schedule is enabled on Feb. 24th when you see us on-site
• You will receive a printed itinerary
AdvocacyDay App – Day-of Features
• Map to meetings• GPS routing
• Take notes about meetings
• View talking points
• Feedback surveys
• Post to Twitter and Facebook
• Chat with other advocates
AdvocacyDay App – Preparation Features
• Research your legislators• Bio• Committee info• Social media• Website• News
• Research your bills• Summary• Status• Cosponsorship• Votes
• You will receive your app login tomorrow so you can research your Members of Congress and bills in advance
AdvocacyDay App!
Our app is available in the App Store for iPhone or iPad and in the marketplace for Android. You can also access a web version of the app at http://advocacyassociates.constituentvoice.net/
Please note that the app is called AdvocacyDay(all one word) by Constituent Voice.
Urgent Healthcare Policy Needs of the Rare Disease Community
@ The U.S. Capitol Visitors Center 12:00 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.
Presented by:
Thursday 1:30 pm on the West Steps of the Capitol (the steps that face the Capitol Mall and the Washington Monument)
5:30-8:00 PM
Rayburn House Office Building
Come view the art from winners of the 2014 RareArtist competition and mingle and network with congressional staff
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
*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
Feel Free to contact us! @ (415) 884-0223
Andy Russell [email protected]
Max Bronstein [email protected]
Check for Latest updates on www.RareAdvocates.org Join us our Facebook event for updated event information & meet other advocates before you
arrive! - https://www.facebook.com/events/384428118404442/
