Disease Awareness and Events Calendar
Throughout the year, patient advocates and organizations support a wide variety of initiatives to raise disease awareness and understanding in support of their cause. These disease awareness events focus our efforts and our attention so that together we may educate the public, engage decision-makers, and galvanize communities to improve the lives of people who are affected by rare diseases. With these events, we are unified in the celebration of our collective accomplishments and in our renewed commitment to do more.
We could not possibly list the thousands of rare disease awareness events on this site. The list below highlights just some of the annual global or national initiatives that are relevant to our work at Genzyme. These large scale events focus on lysosomal storage disorders, familial hypercholesterolemia, thyroid cancer and other rare diseases on which Genzyme focuses.
Rare Disease Day
Established in 2008, Rare Disease Day is an international campaign designed to focus attention on the impact of rare diseases. Although started in Europe, it has evolved into a global initiative, with dozens of countries hosting hundreds of awareness-raising events and activities each year. Learn more about this event and Genzyme's involvement
Fabry Disease Awareness Month
Fabry disease is a rare inherited disorder that prevents the body from producing enough of an enzyme called alpha-galactosidase A, or alpha-GAL. In recent years, the Fabry community has marked the month of April as Fabry Disease Awareness Month as a way to honor and recognize those who are affected by the disease and to create greater awareness of the disease.
World Health Day, World Health Organization (WHO)
Created to mark the founding of the WHO, World Health Day has been celebrated annually on April 7 since 1950. Each year brings a different theme, selected to highlight a priority area of concern for the WHO, and both global and local events are planned and held around the world to highlight and support the theme and its related issues. Learn more.
International Pompe Awareness Day
Pompe disease is a rare, inherited and often fatal disorder that disables the heart and muscles. It is also known as Acid Maltese Deficiency (AMD) or Glycogen Storage Disease type II (GSD-II). To raise awareness around Pompe disease, the international Pompe community marks April 15th as International Pompe Day. Learn more.
The third Monday of every April
Boston Marathon & Running for Rare Diseases
The world's oldest annual marathon (begun in 1897), the Boston Marathon is probably the most well-known and respected road race that includes fundraising for charitable causes. Millions of dollars are raised each year for dozens of charities. Among the many runners who run for a charitable cause is Genzyme’s own Running for Rare Diseases team, a group of Genzyme employees who run the marathon to raise awareness and funds for the National Organization for Rare Diseases (NORD). Learn more.
International MPS Awareness Day
Mucopolysaccharidoses, or MPS diseases, are a group of rare genetic diseases all caused by the body's inability to produce a particular enzyme. For several years, the global MPS community has marked May 15 as International MPS Awareness Day, a way to honor and recognize those who suffer from the diseases, those who care for them, and the doctors and scientists working toward a cure. Learn more.
Pompe Awareness Month - Brazil
Launched by the Brazilian Neurology Academy with support from Genzyme, Pompe Awareness month seeks to raise awareness of Pompe Disease through media outreach and community events. The goal of this month is to increase physician and general public awareness of the disease.
Pompe Awareness Day - India
Launched by the LSD Support Society in India in 2012, Pompe Awareness Day seeks to raise awareness of Pompe Disease through media outreach and community events. Learn more.
Thyroid Cancer Awareness Month
Although a highly treatable cancer, statistics show that the incidence of thyroid cancer is on the rise in the U.S., so increasing disease awareness continues to be an important part of achieving accurate diagnosis and early intervention. ThyCa, the Thyroid Cancer Survivors' Association, sponsors Thyroid Cancer Awareness Month to spread the word about the importance of early detection, treatment options, and the resources and support available from ThyCa and other organizations. Learn more.
FH Awareness Day
2013 marked the first annual FH Awareness Day, sponsored by the FH Foundation, calling attention to this genetic disease that causes high production of LDL cholesterol. Familial Hypercholesterolemia can occur in two forms: heterozygous, and homozygous. While the homozygous form (HeFH) is much more rare, occurring in 1 up to 1 million people worldwide, FH Awareness Day aims to raise awareness of people all who are living with this condition.
National Niemann-Pick Disease Awareness Month
A rare genetic condition, Niemann-Pick disease belongs to the category known as lysosomal storage disorders. Across the United States, members of the Niemann-Pick community dedicate the month of October to awareness- raising activities, including fundraising and media coverage, petitioning for local government recognition of the month, and spreading the community's "Persevere" message.
National Family Caregivers Awareness Month
The Caregiver Action Network (formerly called the National Family Caregivers Association) is an advocacy organization supporting the more than 65 million Americans who care for ill or disabled love ones. The group began promoting Thanksgiving week as a time to celebrate family caregivers in 1994, and in 1997 the first presidential proclamation officially recognizing the initiative was issued. Since then, the week has grown to become a month-long campaign highlighting the important contributions of these special patient supporters.