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Rare Disease Day

Rare Disease Week on Capitol Hill Summaries

Rare Disease Week on Capitol Hill took place in Washington DC during the last week of February, where rare disease advocates were given the opportunity to meet with Members of Congress and to learn about policy updates and best practices for successful advocacy. A special Thank You to Margo Frey, Havi Martinez, Shannon Reedy, and Anne OConnor Smith for attending this event on behalf of you, the Niemann-Pick community.

Click below to read the summaries of their learnings and experiences.

 

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Rare Disease Week on Capitol Hill

What is Rare Disease Week on Capitol Hill?
Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, will bring together over 800 patients, caregivers, and others in Washington, DC for a week of events dedicated to empowering patients, families, friends, and healthcare professionals to become legislative advocates. During the week of February 24 – 29, 2020, 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.

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.

NNPDF Advocacy Stipend
A limited number of stipends were offered by the NNPDF to Niemann-Pick individuals or caregivers to attend Rare Disease Week on Capitol Hill in Washington, DC from February 24 – 29, 2020. Congratulations to the following stipend recipients: Margo Frey, Havi Martinez, Shannon Reedy, and Anne OConnor Smith. We are eager to read the summaries of their learnings and experiences in the March issue of the NNPDF Newsletter.


Rare Disease Day

Rare Disease Day is February 29th! Show your support on Rare Disease Day by raising awareness of what it means to be rare. There are over 300 million people worldwide living with a rare disease. Together across borders, and across the 6000+ rare diseases we work towards more equitable access to diagnosis, treatment, care and social opportunity. The key message for Rare Disease Day 2020 is that:

Rare is many worldwide.

Rare is strong every day.

Rare is proud everywhere.

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Anyone can get involved in Rare Disease Day awareness. Participants can find helpful resources, activities and events to get involved at rarediseaseday.org. This global event was founded by EURORDIS and is sponsored by the National

 Organization for Rare Diseases (NORD).

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NNPDF Rare Disease Day Participation

To raise awareness for Niemann-Pick Disease and Rare Disease Day the NNPDF has created a custom frame for your Facebook profile pictures. Also, please feel free to display and share the NNPDF Rare Disease Day Facebook banner to promote awareness.

To add the NNPDF Rare Disease Day frame to your Facebook profile picture:

  1. Go to facebook.com/profilepicframes and log in to your page.
  2. Search for “NNPDF Rare Disease Day 2020” frame and click selection.
  3. Click “change picture” in the upper right of the frame window to change your photo if desired.
  4. Adjust to fit by using slider at bottom of frame, set duration preferences if desired and click “use as profile picture” button.
  5. You may also do this by selecting “update” on your profile photo from your profile page, select add frame, and search for the “NNPDF Rare Disease Day 2020” frame.

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Rare Disease Week on Capitol Hill

What is Rare Disease Week on Capitol Hill?
Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, will bring together over 800 patients, caregivers, and others in Washington, DC for a week of events dedicated to empowering patients, families, friends, and healthcare professionals to become legislative advocates. During the week of February 24 – 29, 2020, 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.

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.

NNPDF Advocacy Stipend
A limited number of stipends were offered by the NNPDF to Niemann-Pick individuals or caregivers to attend Rare Disease Week on Capitol Hill in Washington, DC from February 24 – 29, 2020. Congratulations to the following stipend recipients: Margo Frey, Havi Martinez, Shannon Reedy, and Anne OConnor Smith. We are eager to read the summaries of their learnings and experiences in the March issue of the NNPDF Newsletter.

02/14/2020 jjb