About us

The Rare and Undiagnosed Network of Charlotte, is a patient and family oriented organization for caregivers and individuals with rare and undiagnosed conditions in the Carolinas. Rare and Undiagnosed Network of Charlotte is dedicated to providing resources and social support, community education and advocacy and programming for caregivers and individuals.

History: 

The Rare and Undiagnosed Network of Charlotte was started in 2019 by a group of parents with children with rare and undiagnosed conditions to provide support, networking and resources to families in the Carolinas.

Vision:

The Rare and Undiagnosed Network of Charlotte will be a leader within the rare disease community in support and empowerment of families of and individuals with rare and undiagnosed diseases through social networking, educational opportunities and resource provision. The Rare and Undiagnosed Network of Charlotte will increase awareness of rare and undiagnosed disease in the Carolinas via an annual World Rare Disease Day event and community advocacy.

Misson:

The Rare and Undiagnosed Network of Charlotte is a patient and family oriented organization for caregivers of and individuals with rare and undiagnosed diseases in the Carolinas. The Rare and Undiagnosed Network of Charlotte is dedicated to providing resources and social support, community education and advocacy and programming for caregivers of and individuals with rare and undiagnosed diseases.

Goals for The Rare and Undiagnosed Network of Charlotte (in progress):

  1. Meet regularly for social and educational opportunities for families and caregivers.
  2. Meet annually for the World Rare Disease Day Rally.
  3. Provide social support and community/national resource links via social media and our website.
  4. Offer an ambassador to help families and individuals new to the rare and undiagnosed disease community.
  5. Provide programming opportunities for individuals with rare and undiagnosed disease, partnering with local health and community organizations as applicable.
  6. Participate in and organize local, state and national advocacy and outreach opportunities for the rare and undiagnosed disease community.
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