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

� This will be our 3 rd 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 & 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

� Regular meetings/calls to discuss pending legislation ◦ Agenda is open for all organizations to contribute � Helps coordinate the Rare Disease Congressional Caucus � Lobby Day ◦ 1 st Lobby Day in 2012 - 70 Advocates on the Hill � Supporting the ULTRA/FAST Legislation & Creating Hope Act – both were included in FDASIA ◦ 2 nd 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 organizations/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 organization is listed correctly!

� International Pemphigus and Pemphigoid Foundation Addi & Cassi Fund � � Interstitial Lung Disease Addison ’ s disease � � International Society for Mannosidosis & Related Diseases ALS Assn. � � International Waldenstrom's Macroglobulinemia Foundation AMEND USA-Asso. for Multiple Endocrine Neoplasia Disorders � � Jett Foundation APFED � Jonah's Just Begun � Auto Inflammatory Alliance – CAPS � Joshua Frase Foundation � Batten Disease Support & Research Assn. � Kids v Cancer � � Let Them Be Little X2 Beckwith Wiedemann Children ’ s Foundation � � Lennox-Gastaut Syndrome foundation Bellwether Patient Advocacy � � Lipodystrophy United Ben's Friends � � Little Miss Hannah Foundation Bladder Cancer Advocacy Network � � M.O.M.'s & D.A.D.'s Against Fabry! CADASIL Association � Minnesota State Childhood Cancer Coalition � Caleb's Crusade Against Childhood Cancer � MLD Foundation � CurePSP - The Foundation for CBD and Related Brain Diseases � Myocarditis Foundation � � Myotonic Dystrophy Foundation Congenital Disorders of Glycosylation Family Network � � National Gaucher Foundation Chase the Cure for Niemann Pick Type C � � National MPS Society Childhood Cancer Advocate � � National PKU Alliance Cure AHC, Cure JM Foundation � � National Patient Advocate Foundation Dercums Foundation � � Neonatal-Onset Multisystem Inflammatory Disease Alliance Desmoid Tumor Research Foundation � Noah ’ s Hope � Ehlers-Danols Syndrome � Pancreatic Neuroendocrine Tumor Cancer � EmesArmy � Patients for Clinical Research � � Pediatric Hydrocephalus Foundation Inc. Fabry Awareness USA � � Phelan-McDermid Syndrome Foundation Foundation for PSP � � Pseudohypoaldosteronism Foundation Families of Spinal Muscular Atrophy � � Pulmonary Fibrosis Foundation Fibromuscular Dysplasia Society of America � � Rasopathies Network USA - NJ Rare FMD Chat � Spontaneous Coronary Artery Dissection � Fragile Skin Foundation � Sarcoma Foundation of America � Gist Cancer Awareness Foundation � SSADH Association � � Sweet's Syndrome Awareness Gene Spotlight Inc. � � Talk Health with Jamie Inc. Global Genes|RARE Project � � Taylor's Tale Gold Rush Cure Foundation � � The IHope Foundation: Intracranial Hypertension Hope 4 Hunter � � The Lam Foundation Hope 4 Tyler and Luke � � 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 6 th ◦ 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 of 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 Union Station Take the Red Line to Union Station then walk south towards the Capitol (down 1 st ST. NE) to Constitution Ave. NE

� 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 of one page