Disease Awareness and Events Calendar
Throughout the year, organizations support a variety of initiatives to raise awareness and stimulate conversations about rare diseases. These events bring communities together to help educate the public and influence decision makers in an effort to affect real change in lives of those effect by rare diseases.
February
Rare Disease Day
Established in Europe in 2008, Rare Disease Day is now observed in more than 65 countries including the United States Its focus is to highlight the impact that rare diseases have on families and communities. On Rare Disease Day, millions of patients and families from around the world share their stories to promote awareness of the challenges, hopes, and needs of those living with rare diseases. Learn more
April
Running for Rare
Every year, the National Organization for Rare Disorders (NORD) raises awareness for rare diseases while fundraising to support undiagnosed patients through their Running for Rare Team. Learn more
June
National Myasthenia Gravis Awareness Month
This event is designed to raise awareness, engage key decision makers and health professionals, and increase funding for research and support programs for caregivers and patients with myasthenia gravis. Learn more
August
Spinal Muscular Atrophy Awareness Month
Families of SMA was established in 1984; in 2014 they became Cure SMA but contiuned the goal of finding a cure for spinal muscular atrophy. This event highlights the year-round effort to raise public awareness and increase funding for a cure. Learn more
September
Newborn screening awareness
The earliest newborn screening occurred in 1967; since then it has become a common practice but more can be done. This event brings together advocacy organizations, states, providers, and families from across the nation in an effort to raise awareness about the importance of expanding newborn screening. Learn more
October
Patient-Centered Care Awareness Month
This global awareness campaign occurs every October and celebrates the progress that has been made in patient-centered care, while highlighting the work that still needs to be accomplished. It is a time to reflect on the important role that patients and families play in the delivery of healthcare. Learn more
November
National Family Caregivers Month
Celebrated every November, the National Family Caregivers Month is a time to celebrate family caregivers and recognize their importance in healthcare. This event raises awareness of family caregiver issues, educates family caregivers, and increases support for family caregivers. Learn more
Disease Awareness and Events Calendar
Throughout the year, organizations support a variety of initiatives to raise awareness and stimulate conversations about rare diseases. These events bring communities together to help educate the public and influence decision makers in an effort to affect real change in lives of those effect by rare diseases.
February
Rare Disease Day
February 28
Established in Europe in 2008, Rare Disease Day is now observed in more than 65 countries including the United States Its focus is to highlight the impact that rare diseases have on families and communities. On Rare Disease Day, millions of patients and families from around the world share their stories to promote awareness of the challenges, hopes, and needs of those living with rare diseases. Learn more
April
Running for Rare
April 6, April 22, and June 15
Every year, the National Organization for Rare Disorders (NORD) raises awareness for rare diseases while fundraising to support undiagnosed patients through their Running for Rare Team. Learn more
June
National Myasthenia Gravis Awareness Month
This event is designed to raise awareness, engage key decision makers and health professionals, and increase funding for research and support programs for caregivers and patients with myasthenia gravis.
Learn moreAugust
Spinal Muscular Atrophy Awareness Month
Families of SMA was established in 1984; in 2014 they became Cure SMA but contiuned the goal of finding a cure for spinal muscular atrophy. This event highlights the year-round effort to raise public awareness and increase funding for a cure. Learn more
September
Newborn screening awareness
The earliest newborn screening occurred in 1967; since then it has become a common practice but more can be done. This event brings together advocacy organizations, states, providers, and families from across the nation in an effort to raise awareness about the importance of expanding newborn screening. Learn more
October
Patient-Centered Care Awareness Month
This global awareness campaign occurs every October and celebrates the progress that has been made in patient-centered care, while highlighting the work that still needs to be accomplished. It is a time to reflect on the important role that patients and families play in the delivery of healthcare. Learn more
November
National Family Caregivers Month
Celebrated every November, the National Family Caregivers Month is a time to celebrate family caregivers and recognize their importance in healthcare. This event raises awareness of family caregiver issues, educates family caregivers, and increases support for family caregivers. Learn more
