The New Jersey Rare Action Network invites you to join us for virtual Rare Disease Day Thursday, March 4, 2021 10:00 am - 12:00 pm EST
You're invited to join patients, families, caregivers, and other rare disease advocates as we raise awareness and celebrate 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 our virtual Rare Disease Day event, we will explore 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. We hope you can join us on Thursday, March 4th as we work to educate our lawmakers on the importance of advocating for public policies that support the rare disease community. Sincerely,
Julie Raskin julie.raskin@rareaction.org
New Jersey Rare Action Network Volunteer State Ambassadors
The Rare Action Network® is powered by NORD, the leading non-profit organization that is serving the rare disease community through programs of advocacy, education, research, and patient services.
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