In November, CHI (Congenital Hyperinsulinism International) qualified for membership to NORD, The National Organization for Rare Diseases. “This is really good news for CHI,” said Isabel Calderon the CHI Board of Directors liaison to NORD. “With this membership, CHI will be able to benefit from NORD’s many resources and services.”
Prior to the creation of NORD in 1983, many organizations that worked to improve the lives of people with rare diseases were isolated and unable to get the attention they needed to make a difference. With the establishment of NORD, their voices are now heard. A rare or “orphan” disease affects fewer that 200,000 Americans. When rare disease organizations work together on common goals, they gain strength in numbers.
NORD was created when family members and patients worked together to get the Orphan Drug Act passed. This important legislation provides financial incentives to encourage development of new treatments for rare diseases. Today, once again, NORD is advocating for its members on pending legislation, urging Congress to act on health care reform, a critical issue for people living with chronic disease.
Matt Hopkins, President of CHI sees NORD membership as a great step forward because it will put CHI in the loop on a number of important fronts including information on patient assistance programs, research grants and fellowships, and access to investigational treatments. NORD membership will also provide CHI with many opportunities to amplify its awareness and advocacy work.
Julie Raskin
Vice President, CHI
