Rare Disease Day – February 29th 2024


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Rare Disease Day – When and What Is It?

Rare Disease Day is February 29th, 2024, and raises awareness for over 7,000+ rare diseases impacting 300 million people across the globe. By celebrating this day, the community hopes to advocate for rare disease research as well as gather support from the community for those impacted. The National Organization for Rare Diseases (NORD) is the official US partner for rare diseases that works with international partners to advocate for health equality for those with rare diseases. Rare Disease Day is typically celebrated on the last day of February to bring awareness to rare diseases. This annual celebration promotes awareness and research for rare diseases as well as gathers important resources and a supportive community for those impacted.

What are the Rarest Diseases?

A condition is considered a NORD rare disease when less than 200,000 Americans are diagnosed with a particular disease. Rare diseases are also known as ‘orphans’ because drug companies were not interested in adopting them to develop treatments. Diagnoses for rare conditions are scarce as doctors typically do not have enough information on the disease to undoubtedly diagnose patients.

There are over 7,000 rare diseases that affect patients globally. These thousands of conditions span from rare autoimmune diseases to viral infections. We’ve put together a list of rare diseases in the hope of raising awareness of them.

  • Mesothelioma, The Sudden Killer: Mesothelioma is one of the rare or ‘orphan’ diseases affecting one in ten Americans. Mesothelioma is an asbestos-caused cancer that develops in the lining of the lungs, stomach, heart, and testicles. As Mesothelioma is an ‘orphan’ disease, there is little research, making it extremely isolating. Researchers and medical centers are pushing forward, though, with promising clinical trials proving effective.
  • Hutchinson-Gilford Progeria Syndrome: Hutchinson-Gilford Progeria Syndrome is characterized by the accelerated appearance of premature aging starting in childhood. This disease affects one in 8 million children, with fewer than 100 cases documented in medical history. This is caused by a letter misspelling in a gene on chromosome 1 that codes for Lamin A. The abnormal Lamin A protein produced in HGPS is called progerin. The signs and symptoms of this condition include alopecia-related hair loss, short and petite stature, and small features.
  • Fibrodysplasia Ossificans Progressiva: Fibrodysplasia ossificans progressiva (FOP) is a disorder where bone abnormally develops where it is not normally present. The soft tissues in the body transition into bone, locking joints into place and making it difficult to move. There are only 900 recorded cases in all of history.
  • Paraneoplastic Neurologic Syndromes: Paraneoplastic Neurologic Syndromes (PNS) refers to a group of conditions that affect the nervous system in patients with cancer. These conditions can vary in signs and symptoms but typically are displayed through neurological effects. Although rare, paraneoplastic neurologic syndromes affect 10% of immunological cancer patients.

Rare Disease Day at the National Institute of Health

There are several ways to get involved in Rare Diseases Day, such as celebrating the day at the National Institutes of Health (NIH). The NIH along with the National Center for Advancing Translational Sciences has celebrated this day since 2011, by hosting panel discussions, rare diseases stories, in-person exhibitors, and scientific posters and art exhibitions. Rare Disease Day at NIH is happening on Thursday, February 29th at 9:00 am, and seeks to inform patients, caregivers, health care providers, researchers, and students on:

  • Presenting research to help those with rare diseases
  • Highlight diagnostics and treatments for rare diseases
  • Create conversations among the rare disease community
  • Share stories from patients living with rare diseases

How to Support People with Rare Diseases

A primary focus of Rare Disease Day is providing support to patients. Many rare disease patients spend a lot of time alone which is the perfect time to get involved. Creating a community for those to turn to when they are struggling can help overcome the loneliness of a disease. Supporting those affected by rare diseases in seeking legal aid can help. Oftentimes there are settlements provided to patients to support payments associated with treatment at specialized facilities.

According to government statistics, between 85-90 percent of rare diseases are considered serious or life-threatening, but only around 200 of them have effective treatments currently. By raising public awareness, donating, and advocating for research, sustained support for patients is possible. The impact of working together in the rare disease community only strengthens the impact made. If you or anyone in the community is looking to take that extra step in your rare cancer journey and are seeking legal assistance, our team of patient advocates can help you out.

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