Today, May 15, marks Huntington’s Disease Awareness Day, a key moment during Huntington’s Disease Awareness Month to recognize the urgent need for progress in the fight to accelerate Huntington’s research.
Huntington’s Disease (HD) is a rare, inherited neurodegenerative disorder with diverse motor, cognitive, and behavioral symptoms, for which disease-modifying therapies are critically lacking. Patient advocacy and the development of disease modifying therapeutics for HD are therefore critically needed. We at C-Path’s Huntington’s Disease Regulatory Science Consortium (HD-RSC) are honored to work with the many diverse stakeholders in the HD community, including affected individuals and their families, nonprofit research and advocacy groups, clinicians, researchers, regulatory agencies, and drug developers. This unique public-private partnership pledges to drive the development of novel therapeutics with the potential to modify the course of HD.
HD-RSC currently brings together experts spanning the HD community to validate and seek regulatory qualification of biomarkers to enable clinical trials aimed at earlier stages of disease, including before the onset of clinically detectable symptoms. We are also actively engaged in de-risking therapeutics development by exploring ways to reduce the burden of placebo arms in clinical trials on both the patient and caregiver communities and industry sponsors.
Raising awareness about this rare, yet critical, disease plays a crucial role in changing this reality. It fosters greater public understanding of the challenges faced by individuals and families affected by HD. Awareness campaigns encourage empathy, reduce stigma, and promote early intervention through education. They also energize advocacy efforts that push for improved care options, access to therapies, and increased funding for research into treatments and ultimately, a cure.
Moreover, awareness days provide a platform for communities to unite in solidarity, support those suffering from the disease, and amplify the voices of caregivers and advocates. By increasing visibility, Huntington’s Disease Awareness Day helps ensure that this rare condition receives the attention and resources it deserves. Each step forward in awareness brings us closer to meaningful change for those living with HD and their loved ones.
Check out the impactful work HD-RSC in engaged in here: Huntington’s Disease Regulatory Science Consortium
