Resources

Resources

In an effort to draw on the expertise and resources of the community, TGen’s Center for Rare Childhood Disorders has established a National Advisory Committee and a Parent Advisory Committee.

These panels will help guide the Center provide a catalyst for the rapid exchange of concepts and ideas, enable families to share their challenges and triumphs, and muster support.

National Advisory Committee

The National Advisory Committee (NAC) of the Center for Rare Childhood Disorders is a core group of advisors and supporters with a passion for helping children and families affected by rare and neglected pediatric diseases and disorders. Members of the NAC, Chaired by Jacquie Dorrance and David Harbour, provide key volunteer leadership, resources, and vision for the Center. The NAC leverages their diverse professional expertise and relationships to inform strategic planning, promote TGen and the Center among thought leaders, and identify potential community partners and volunteer leaders for the Center.

Parent Advisory Committee

From the beginning, TGen’s Center for Rare Childhood Disorders has sought the guidance of our families. The Parent Advisory Committee (PAC) is a vital component of the Center’s institution-wide effort to provide family centered care. The PAC, Chaired by Karie Dozer, works closely with TGen staff to ensure parents and caregivers have a voice in policies, programs and practices affecting the delivery of care and services. Members share their experiences, opinions and suggestions in areas including quality of care, marketing, research, strategic planning, and grassroots fundraising efforts.

For more information about the Center’s advisory panels, please contact:
Robyn Nebrich -TGen Foundation Assistant Development Director,  602-343-8638 rnebrich@tgen.org

Global Genes

TGen’s Center for Rare Childhood Disorders works in collaboration with Global Genes who is a leading rare disease patient advocacy organization whose mission is simple: to eliminate the challenges of rare disease. They do this through developing educational resources, providing critical connections, and equipping advocates to become successful activists. Here is a link to their RARE Toolkits

RARE Toolkits are educational resources that provide critical information on topics important to the rare disease community.