Eric and his wife Amanda Majusiak attended NJ Rare Disease Day along with RD the Rare Disease Dragon. RD was excited to make his first public appearance with the Rare Action Network. Attendees were able to take information about Eric's Journey Foundation and their programs - along with some super cool RD the Rare Disease Dragon stickers and pins! It was a fun night for all!

This years NJ Rare Disease Day was hosted by NORD Rare Action Network Ambassador Patricia Guerds at the Make-A-Wish Castle, The Samuel & Josephine Plumeri Wishing Place located in Perrineville, NJ.

The goal with the State Resource Fair is to empower patients and families with helpful information, community organizations, and service near where they live to ease their burdens. Often individuals with rare diseases must travel great, costly distances to find care or experts familiar with their condition; very few treatments exist, and it can feel very isolating to have a serious medical condition that most misunderstand. The event will also serve as an opportunity for people to find hope and connect with one another. 

This year EJF President Eric Majusiak and his wife Amanda attended the NJ Rare Action Network New Jersey Rare Disease Day Event virtually on March 4th to work to educate our lawmakers on the importance of advocating for public policies that support the rare disease community.   

The National Organization for Rare Disorders (NORD) is the official Sponsor of Rare Disease Day in the United States alongside our sister organization, EURORDIS (The European Organization for Rare Disorders), which organizes the official international campaign.  

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision makers about rare diseases and their impact on patients' lives. During the virtual Rare Disease Day event, they explored how the formation of a Rare Disease Advisory Council (RDAC) could help address the needs of those living with a rare disease in New Jersey. An RDAC is an advisory body made up of a diverse set of stakeholders that gives the rare disease community a stronger voice in state government. The creation of an RDAC would provide the rare disease community with an opportunity to make formal recommendations about the most important issues they face, including the need for increased research and awareness, knowledgeable health care providers, and timely access to affordable diagnostics, treatments, and cures. 

PS. Eric also was selected as a winner of some awesome NORD swag for participating in this years event.

Learn More About Rare Disease Day at: RareDiseaseDay.org