On February 28, 2011 (24-2-1432H) 22 nations, along with health organizations from more than 40 countries in total, are marking Rare Disease International Day for the fourth year. Rare diseases are defined as those occurring in less than 5 per 10,000 individuals; they can create significant societal burdens, and are considered serious public health concerns.
Awareness-raising activities will be organized under the theme of "Rare but Equal." The day highlights the importance of justice and equality in providing health care to patients with rare diseases. The campaign targets healthcare professionals and decision-makers, community members, and rare-disease patients and their families.
Objectives
- Assigning rare diseases as a high priority for the worldwide public health sector. One method for advancing the awareness of this issue is to list rare diseases within the public health program for the European Union (III), which will set health policies, financing and priorities for the period from 2014 through 2020.
- Focusing on the importance of providing health care to rare-disease patients.
- Highlighting the flaws in available healthcare services to rare-disease patients when compared with other patient categories.
- The campaign will advocate for:
- Equal access for rare-disease patients to healthcare and social services.
- Equal access to basic social rights: health, education, housing.
- Equal access to drugs and treatments.
- Addressing rare diseases as a public health issues, with the cooperation of several nations.
- Drawing attention to rare diseases as a public health issue with international cooperation.
- Raising awareness about rare diseases among healthcare decision-makers, healthcare professionals and the public to improve living conditions for patients. with rare diseases.
- Bringing hope to patients and their families.
Rare Disease Day Logo:
Related links:
- http://www.rarediseaseday.org/article/rare-disease-day-2011-focus
- http://www.rarediseaseday.org/article/about-rare-disease-day
Rare Disease Day 2011
A disease or disorder is defined as rare when it affects less than 1 in 2000 people. Most rare diseases result from genetic conditions and occur at birth, although some do not appear until sometime afterwards. Rare diseases are considered significant social burdens, and as such are also serious public health concerns.
Characteristics of rare diseases
- Usually chronic, progressive, degenerative, and frequently life-threatening.
- Patient’s quality of life is affected by the lack or loss of autonomy.
- High level of pain and suffering are endured by patients and their families.
- There are often no existing effective cures.
- More than 6000 to 8000 kind of rare diseases have been identified.
- 75% of rare diseases touch children.
- 30% of rare-disease patients die before the age of 5.
- 80% of rare diseases have identifiable genetic origins, while others are result from infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
Types of Rare Diseases and Disorders
- Mental
- Cardiovascular
- Chromosomal
- Dermatological
- Infectious
- Endocrinal
- Digestive
- Metabolic
- Nervous system
- Eye
- Lung
- Kidney
- Muscle, bone and joint
Irremediable Diseases
Many rare diseases cannot be cured. Patients with rare diseases suffer because of the lack of scientific knowledge about their conditions, which often results in delays in diagnosis, treatment and appropriate healthcare services.
Treatment Challenges Suffered by Rare-Disease Patients
- Misdiagnosis
- Limited choices of treatment
- Scarcity of medical experts and specialized healthcare facilities
- Expensive treatment compared with other diseases
- Difficulties in accessing healthcare and social services
Important Suggestions for Supporting Patients and Developing Healthcare Services
- Implement a comprehensive program for rare diseases.
- Develop suitable health policies.
- Increase international cooperation in scientific research.
- Acquire and share scientific knowledge for all rare diseases, not just the most common ones.
- Enhance diagnostic and therapeutic procedures.
- Raise awareness of rare diseases.
- Strengthen communication among patients with the same rare disease to share experiences and best practices.
- Support isolated patients and their families in order to provide new communities for patient resources and assistance.
- Set policies for supporting medical research and financial support for patients and their families.
- Encourage companies to develop cures for rare diseases.
Common Problems Faced
People living with rare diseases should be entitled to the same access to and quality of care as other patients; today, the reality is far from that ideal. The rarity of patients and the scarcity of medical experts, knowledge and resources increase the vulnerability of patients who are suffering from life threatening, debilitating, and chronic diseases. Rare diseases are one of the most dramatic examples of healthcare inequality today, both internationally and domestically. Therefore, this year’s campaign seeks to drive home the message that it is important to level the international playing field in the area of rare diseases. The immediate objectives are to put rare diseases high on the public health agenda of each country, and to promote the explicit inclusion of rare diseases in the Third EU Public Health Programme, which will decide the policy and funding priorities in the years 2014 to 2020.
