Rare Care Community

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Rare diseases are defined in the United States as having fewer than 200,000 persons affected by the disease with an estimated 7000 rare diseases identified.  Rare diseases, including rare or orphan cancers, can be chronic, progressive, debilitating, and life-threatening. Information is often scarce and research is usually insufficient.

People affected with a rare cancer also face additional challenges such as delays in obtaining a diagnosis, misdiagnosis, psychological burdens and lack of information and support services for the patient and family.

EDDF’s goal is to raise awareness not only for sarcoma but also other rare cancers to ensure this community of patients and their families receive the highest level of support, service and treatment to meet the challenges their cancer diagnosis brings.

Rare Facts

  • 50% of all cancers are rare

  • There are more than 7,000 rare diseases

Resources

  • EDDF Provide the Assist Fund
  • Rare Connect: online global community sponsored by the National Organization for Rare Diseases (NORD) and Rare Diseases Europe (Eurordis) for rare disease patients to meet and interact with others who share your condition in a supportive and friendly environment

Rare Disease Day USA

Rare Disease Day

Rare Disease Day is celebrated annually on the last day of February to bring widespread recognition of rare diseases as a global health challenge, highlight the importance of research and treatment, and spotlight the impact on the lives of those living with these diseases.  EDDF is proud to support the sarcoma community by participating in Rare Disease Day.

Visit the Rare Disease Day US Website to learn more about the history of Rare Disease Day.

 

Rare Disease Day 2015

EDDF will host a number of awareness activities on our social media channels throughout the week of February 23-28th.  Join us by sharing the infographics below to help bring attention to all rare diseases and cancers including sarcoma.

 

Rare Disease Day 2013

EDDF was pleased to be one of only two sarcoma organizations represented at the Rare Disease Day Texas Rally 2013 on the state capital steps in Austin, Texas.  Check out highlights from the day.

 

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