NORD Opens to Public Training Videos for Rare Disease Advocacy

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by Mary Chapman |

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Because the rare disease community needs allies to promote its interests in areas that include health parity, proper diagnoses, treatment access and affordability, the National Organization for Rare Disorders (NORD) is opening to the public videos of advocacy sessions from its forum.

This previously exclusive, paid content is from NORD’s “Living Rare, Living Stronger Patient and Family Forum” presented virtually June 26–27, 2021. The sessions are being offered as part of the organization’s ongoing #NORDGivesBack efforts to share information with the rare disease community, including those affected by aromatic l-amino acid decarboxylase (AADC) deficiency.

The forum is an annual patient-focused conference that provides patients and their families with practical tools for living well with a rare disease. It offers sessions with perspectives from patients, caregivers, and the medical community. Last year’s forum had more than 700 registrants from 47 states and 10 countries.

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With more than 25 million U.S. residents thought to be living with a rare disease, health advocates are needed to support and promote patients’ rights and a community’s health, often through initiatives that focus on available, safe, and quality care.

Advocates also identify emerging public health issues, collect information on existing practices regarding public health, monitor pertinent legislation, give feedback on how specific issues affect communities, and can help to guide health policy reforms.

NORD is offering video recordings from two of its advocacy forum sessions.

One is titled “Fighting Back & Fighting Forward Through Advocacy.” This 43-minute session explores how to get involved in rare disease advocacy and offers tips for becoming the best advocate possible. It features Rose Gallagher, NORD’s associate director of public policy; Jhoanny Cardenas, Florida Volunteer State Ambassador, NORD RareAction Network; and Irfan Patel, Delaware Volunteer State Ambassador, also with the network.

The RareAction Network works to connect and empower a network of individuals and organizations with the tools, training, and resources to become effective advocates.

The other session recording, “The ABCs of Advocating for Your Child’s Education,” discusses the rights and protections of school-age children with a rare disease and how parents can develop the skills to effectively advocate for them.

The 40-minute session features Deborah Ayers, president of the Avalon Foundation; attorney Laura Heneghan; and Nikki McIntosh, creator and founder of Rare Mamas, an organization that helps mothers of children with rare diseases navigate rare disease parenting.

“Members of the rare disease community go through many challenging issues regarding health equity, the diagnostic odyssey, access and affordability to proper treatments, and more,” NORD stated on a webpage announcing the advocacy videos. “This #NORDGivesBack content dives into different ways to become a rare advocate.”