Rare Disease Patient Perspective
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Rare Disease Day News Recap

Rare Disease Day is an annual observance held on the last day of February (February 28th or 29th, depending on the year) to raise awareness about rare diseases and their impact on patients’ lives. It was first launched by EURORDIS (European Organisation for Rare Diseases) and its Council of National Alliances in 2008.
 
The main objective of Rare Disease Day is to raise awareness among the general public, policymakers, researchers, and healthcare professionals about rare diseases and their impact on patients’ lives. The day also aims to advocate for improved access to diagnosis, treatment, and care for people with rare diseases and promote research into these often overlooked conditions.
 

Rare Disease News

Each year, Rare Disease Day focuses on a specific theme or aspect related to rare diseases to highlight various challenges and opportunities in the field. Working with BioNews since October 2021, I have been surrounded by other passionate change-makers in the rare disease community. Here is a recap of first-hand accounts from patients and caregivers about what Rare Disease Day means to them.
  1. The benefits of community engagement across our rare diseases (sickle cell)
  2. Your perception of multiple sclerosis probably isn’t my reality (multiple sclerosis)
  3. Being rare isn’t the same as being lonely (aHUS)
  4. Finding good in our rare disease story may not be so rare (SMA)
  5. Reflecting on the odds of winning my very specific lottery (PNH)
  6. Celebrating the zebras: Rare Disease Day and the power of advocacy (porphyria)
  7. Take advantage of the opportunity to increase rare disease awareness (pulmonary fibrosis)
  8. For Rare Disease Day, I’m using my voice to advocate on the Hill (neuromyelitis)
  9. On Rare Disease Day, we must turn awareness into action (AADC)
  10. Explaining Pompe disease to my son’s kindergarten class (Pompe)
  11. We’ve never had more opportunities for raising awareness (Lambert-Eaton)
  12. To improve our quality of life, we have to imagine greater awareness (sickle cell)
  13. Education is a part of living with a rare disease like myasthenia gravis (myasthenia gravis)
  14. Rare Disease Day in a leap year keeps focus on the rarest of the rare (Friedreich’s ataxia)
  15. In the rare disease community, more than diagnoses connect us (SMA)
  16. Sharing our rare disease stories is vital for building community (sarcoidosis)

The importance of hearing first-hand from people in the rare disease community.

Personal Experiences

People living with rare diseases offer firsthand insights into the challenges, experiences, and needs associated with their conditions. Their stories provide a human perspective that can help others understand the impact of rare diseases on individuals and families.

Rare Disease Advocacy

Sharing their experiences empowers individuals with rare diseases to advocate for themselves and others in similar situations. By speaking out, they can raise awareness, promote research, and advocate for improved access to diagnosis, treatment, and support services.

Education

Hearing from people with rare diseases can help educate the public, healthcare professionals, policymakers, and researchers about the diverse array of rare conditions and their unique challenges. This can contribute to greater understanding, empathy, and support for individuals living with rare diseases.

Research For Cures

Patient perspectives and experiences are valuable contributions to rare disease research. They can help researchers prioritize areas of study, design patient-centered clinical trials, and develop more effective treatments and interventions.

Rare Disease Community Building

Sharing experiences can foster a sense of solidarity and community among individuals with rare diseases, their families, and caregivers. This sense of connection can provide emotional support, reduce feelings of isolation, and empower individuals to navigate the challenges of living with a rare condition.