Nearly a dozen patient advocates from across Alabama, along with leadership from HudsonAlpha Institute for Biotechnology, visited the Alabama State House in March to raise awareness of rare disease in the state.
Alabama Rare, a patient advocacy organization, organized the event, which included a display to show the breadth of rare disease across Alabama, testimonies from patients, and resource materials for legislators. HudsonAlpha coordinated patient advocate meetings with state leaders and lawmakers throughout the day.
“Alabama Rare’s function is to unite and support patients and families with rare disease, raise awareness and advocate for change,” said Swapna Kakani, a rare disease patient and the founder of the organization. “Nearly one in ten Americans has a rare disease, and though the conditions may differ, the needs of our population are similar.”
HudsonAlpha has made significant strides in the rare disease space. The Smith Family Clinic for Genomic Medicine solves families’ diagnostic odysseys for unknown rare conditions. Research programs such as CSER, AGHI and SouthSeq, in collaboration with UAB, have diagnosed hundreds of children and adults statewide.
“Through our research and clinical programs, HudsonAlpha has formed close relationships and worked with many of the Rare Disease families from across Alabama. Today, however, we are in Montgomery to support these families and introduce them to those that represent us in the legislature. Our legislators are able to hear directly from these families about their challenges with rare diseases,” said Carter Wells, vice president for economic development at HudsonAlpha.
This is Alabama Rare’s second legislative advocacy day. The State House visit wraps a week of Rare Disease Day activities which included a meeting with Governor Kay Ivey, a bill signing, a press conference and a two-day symposium.