Event Calendar

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 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 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

Advocacy Organizations

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Event Calendars

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Patient Engagement

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