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Rare Disease Week on Capitol Hill

Advocacy Stipend Application Deadline – January 26, 2024

Rare Disease Week on Capitol Hill NNPDF Advocacy Stipend

NNPDF is offering a limited number of $500 stipends to help offset the cost for Niemann-Pick individuals, family members, or caregivers to attend Rare Disease Week on Capitol Hill in Washington, DC from February 25 – March 1, 2024.

CLICK HERE ► to learn more and apply.

What is Rare Disease Week on Capitol Hill?

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, caregivers, 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 provide 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 Rare Disease Week, 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.

Rare Disease Week on Capitol Hill 2024 kicks off on Sunday, February 25th with Rare Disease Documentary Screening and Reception.

Participants will attend the full day Legislative Conference* on Monday, February 26th 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.

“Hill meetings” will be taking place throughout the day of Tuesday, February 27th. 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.

On Wednesday, February 28th, attendees will first meet at the Achieving Equity in Rare Disease Roundtable on Capitol Hill and after lunch 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. Wednesday’s event concludes 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.

On Thursday, attendees can attend Rare Disease Day at NIH 2024 in Bethesda, Maryland. 2024 Rare disease week will wrap up with Rare Disease Day at FDA (a virtual event) held on Friday, March 1st.

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 at least two of the following events:

  • Sunday, February 25 – Rare Disease Documentary Screening and Reception: 5:30 – 8:45pm ET
  • Monday, February 26 – Legislative Conference: 9:00am – 5:00pm ET
  • Wednesday, February 28 – Achieving Equity in Rare Disease Roundtable: 10:00am – 12:00pm ET
  • Wednesday, February 28 – Rare Disease Congressional Caucus Briefing: 1:00 – 2:00pm ET
  • Wednesday, February 28 – Rare Artist Reception: 3:30 – 5:30pm ET

3. Write a summary report of their experience at Rare Disease Week to be included in the NNPDF March 2024 newsletter and future NNPDF communications.

How to Apply:

Deadline for applications is JANUARY 26, 2024

Recipients will be notified no later than February 2nd, 2024 and will receive their stipends upon completion of Rare Disease Week. Participants are responsible for making their own travel and hotel arrangements.

CLICK HERE ► to apply for an NNPDF Advocacy Stipend
CLICK HERE ► to register for RDLA’s Rare Disease Week on Capitol Hill

Additional Information

CLICK HERE ► to register for the in-depth webinars on February 6, 13, and 14, 2024. 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, 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

SUNDAY, FEBRUARY 25th:
Rare Disease Documentary Screening and Reception: 5:00 pm ET
Ronald Reagan Building and International Trade Center

MONDAY, FEBRUARY 26th:
Legislative Conference: 9:00 am – 5:00 pm ET
Ronald Reagan Building and International Trade Center

Young Adult Rare Representatives (YARR) Meetup: 6:00 pm ET – Advocates 16-30 years old only
Ronald Reagan Building and International Trade Center

TUESDAY, FEBRUARY 27th:
Meetings with Members of Congress on Capitol Hill, Washington DC

WEDNESDAY, FEBRUARY 28th:
Achieving Equity in Rare Disease Roundtable on Capitol Hill: 10:00 am – 12:00 pm ET

Rare Disease Congressional Caucus Briefing Capitol Hill: 1:00 – 2:30 pm ET

Rare Artist Reception Capitol Hill: 3:30 – 5:30 pm ET

THURSDAY, FEBRUARY 29th:
Rare Disease Day at NIH 2024:  Register separately here.
National Institutes of Health, Building 45, Natcher Building Bethesda, MD

FRIDAY, MARCH 1st:
Rare Disease Day at FDA (virtual):  Register separately here.

Click here for Complete Agenda
For more information, please contact
Laurie Turner, NNPDF Family Services Manager at
920-542-4038 or email familyservices@nnpdf.org.
 
The Rare Disease Week on Capitol Hill Legislative Conference and Lobby Day is an event established for patients and caregivers, patient advocates, and patient advocacy organizations. While representatives from industry are invited to attend the Legislative Conference, the lobby day is for patients and caregivers, patient advocates, and patient advocacy organizations only.

Supporting one another. Supporting our community.