Rare Disease Week on Capitol Hill
Advocacy Stipend Application Deadline – February 6th
Rare Disease Week on Capitol Hill NNPDF Advocacy Stipend
NNPDF is offering a limited number of stipends for Niemann-Pick individuals, family members, or caregivers to attend Rare Disease Week on Capitol Hill in Washington, DC from February 28 – March 2, 2023. Learn more.
What is Rare Disease Week on Capitol Hill?
Now in its 12th year, Rare Disease Week on Capitol Hill empowers and inspires hundreds of advocates each year. Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, brings together hundreds of rare disease individuals, family members, carers, and advocates from across the country to make their voices heard by their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate for policy changes directly to their Members of Congress.
No matter one’s connection to rare disease or their advocacy experience level, all are welcome.
Overview
During the week of February 27 – March 2, 2023, rare disease advocates will have an opportunity to meet with Members of Congress and to learn about policy updates and best practices for successful advocacy.
The Food and Drug Administration (FDA) has announced a virtual public meeting public meeting on Monday, February 27th, Intersections with Rare Diseases. Register separately here.
Rare Disease Week on Capitol Hill 2023 kicks off on February 28th with Rare Disease Day at NIH (register separately here), followed by a documentary screening and Rare Artist Virtual Gallery in the evening.
Participants will attend the full day Legislative Conference on March 1st to learn about the legislative process, legislation currently under consideration by Congress, and effective advocacy techniques to build relationships with Members of Congress and congressional staff. The content is made accessible for both new and experienced advocates. This event is required for advocates to attend Hill meetings.
On March 2, attendees will gather for the Rare Disease Congressional Caucus Briefing which convenes policy experts and rare disease stakeholders to educate Congressional Staff, the public, and advocates on issues of importance to the rare disease community.
“Hill meetings” will be taking place throughout the day where appointments are made for advocates with their Members of Congress and staff. These meetings allow advocates to put what they learned at the Legislative Conference to work, share their stories, and advocate for policy changes that matter most to them. These meetings are for patients and carers only and are not open to industry representatives.
The evening closes with the Rare Artist Reception featuring winners from the Rare Artist contest exhibiting their art and sharing their stories with Members of Congress, Congressional staff and advocates.
Why is Rare Disease Week important to the Niemann-Pick Disease community?
As part of the Niemann-Pick community, we are all advocates and our voices matter. Building awareness about rare diseases like Niemann-Pick disease is so important, and Capitol Hill week is a great opportunity for our voices to be heard.
Rare Disease Week is an opportunity for our community to increase awareness, learn about policy updates, and educate our policy makers about the challenges we face, and needs that we share, in living with Niemann-Pick disease.
What is the NNPDF Advocacy Stipend?
The NNPDF Advocacy Stipend for Rare Disease Week on Capitol Hill is intended to help Niemann-Pick individuals, carers, and families take part in the events planned by RDLA. A limited number of $500 stipends are available to assist with hotel and travel to the event. Attendees are required to make their own travel arrangements including hotel reservations.
Stipend recipients must:
1. Register here for Rare Disease Week on Capitol Hill.
2. Attend the following events:
- Wednesday, March 1
Legislative Conference at the Ronald Reagan Building and International Trade Center: 9:15 am – 4:45 pm - Thursday, March 2
Rare Disease Congressional Caucus Briefing on Capitol Hill: Time TBD
Hill Meetings on Capitol Hill: 10:00 am to 5:00 pm
3. Write a summary report of their experience at Rare Disease Week to be included in the NNPDF March 2023 newsletter and future NNPDF communications.
How to Apply:
Deadline for applications is FEBRUARY 6, 2023
Recipients will be notified no later than February 10th and will receive their stipends upon completion of Rare Disease Week. Participants are responsible for making their own travel and hotel arrangements.
Additional Information
CLICK HERE TO REGISTER for the in-depth webinars on February 14, 16 and 21, 2023. Here you will learn more about Rare Disease Week on Capitol Hill. (We highly encourage you attend.)
CLICK HERE FOR DETAILED INFORMATION on Rare Disease Week on Capitol Hill 2023, the week’s events and locations, travel and hotel accommodations, and event registration.
Travel Arrangements
The NNPDF Advocacy Stipend is intended to help cover some of the costs associated with attending this event. Attendees will make their own travel arrangements including transportation and hotel reservations.
Tentative Schedule of Events
Monday, February 27
FDA’s Rare Disease Day VIRTUAL Public Meeting: Time TBD
Tuesday, February 28
Rare Disease Day at NIH main campus and virtually: 9:00 am – 5:00 pm
Tuesday, February 28
Rare Disease Documentary Screening and Reception at Ronald Reagan Building and International Trade Center: 6:00 pm – 9:00 pm
Wednesday, March 1
Legislative Conference at Ronald Reagan Building and International Trade Center: 9:15 am – 4:45 pm
YARR Leadership Academy Virtual Graduation: 6:00 pm – 7:00 pm
Young Adult Rare Representatives (YARR) meetup: 7:00 pm – 8:00 pm
Thursday, March 2
Rare Disease Congressional Caucus Briefing on Capitol Hill: Time TBD
Hill Meetings scheduled with Members of the House and Senate on Capitol Hill: 10:00 am – 5:00 pm
Rare Artist Reception at Hart Senate Office Building: 5:00 pm – 7:00 pm
CLICK HERE for Complete Agenda
Tentative Schedule of Events
Monday, February 27
FDA’s Rare Disease Day VIRTUAL Public Meeting: Time TBD
Tuesday, February 28
Rare Disease Day at NIH main campus and virtually: 9:00 am – 5:00 pm
Tuesday, February 28
Rare Disease Documentary Screening and Reception at Ronald Reagan Building and International Trade Center: 6:00 pm – 9:00 pm
Wednesday, March 1
Legislative Conference at Ronald Reagan Building and International Trade Center: 9:15 am – 4:45 pm
YARR Leadership Academy Virtual Graduation: 6:00 pm – 7:00 pm
Young Adult Rare Representatives (YARR) meetup: 7:00 pm – 8:00 pm
Thursday, March 2
Rare Disease Congressional Caucus Briefing on Capitol Hill: Time TBD
Hill Meetings scheduled with Members of the House and Senate on Capitol Hill: 10:00 am – 5:00 pm
Rare Artist Reception at Hart Senate Office Building: 5:00 pm – 7:00 pm
CLICK HERE for Complete Agenda
For more information, please contact Laurie at 920-542-4038 or email familyservices@nnpdf.org.