Rare Disease Day -2023

 

Raising Awareness and Empathy

Every year on the last day of February, people around the world observe Rare Disease Day to raise awareness about the impact of rare diseases on patients and their families. Rare diseases are often chronic, debilitating, and life-threatening, affecting over 400 million people worldwide. Despite their prevalence, many rare diseases remain poorly understood and underdiagnosed, leaving patients and their families to cope with the challenges on their own.

The purpose of Rare Disease Day is to shed light on these challenges, promote greater solidarity among rare disease communities, and advocate for more research and better treatments. By raising awareness about rare diseases, we can help to improve diagnosis and treatment, support patients and their families, and promote greater understanding and empathy for those living with these conditions.

One of the biggest challenges patients face with rare diseases is the lack of information and resources available to them. Because rare diseases affect a small number of people, research and development for these conditions may be limited, making it challenging to develop effective treatments or even diagnose the situation in the first place. Patients and their families may struggle to find accurate information about their condition and may face significant barriers in accessing appropriate care and support.

Despite these challenges, patients with rare diseases demonstrate remarkable resilience and courage in the face of adversity. Many are involved in advocacy and support groups, using their experiences to raise awareness and promote change. By sharing their stories and connecting with others affected by rare diseases, patients and their families can build a sense of community and solidarity, helping to overcome feelings of isolation and hopelessness.

As members of society, we can all play a role in raising awareness about rare diseases and supporting those affected by them. By educating ourselves and others about these conditions, we can help to reduce the stigma and misconceptions that often surround them. We can also advocate for greater funding for research and development, and support initiatives that promote greater access to care and resources for patients with rare diseases.

Rare Disease Day is an important opportunity to raise awareness about the challenges faced by patients with rare diseases and promote greater understanding and empathy for those living with these conditions. By coming together to support and advocate for those affected by rare diseases, we can help to make a positive difference in the lives of millions of people around the world.

Tanzania's rare diseases have been a significant healthcare issue in the country. 

In recent years, there have been efforts to improve the situation, and Tanzania has taken steps to develop a national policy for rare diseases. 

In 2018, the Tanzanian government established a Rare Diseases Working Group, which has been working to address the issue of rare diseases in the country. The working group includes representatives from the government, academia, healthcare professionals, and patient organizations.

The working group has made some notable achievements, including developing a draft policy for rare diseases, which is currently under review. Additionally, the group has been working to improve awareness and education about rare diseases among healthcare professionals and the public.

In 2020, the Rare Diseases Working Group organized the first-ever Rare Diseases Day in Tanzania, which was aimed at raising awareness about rare diseases and advocating for better healthcare services for patients with rare diseases in the country. The event included a symposium, awareness campaigns, and outreach programs aimed at educating healthcare professionals, patients, and the public about rare diseases.

Reference 

• The burden of rare diseases in Tanzania: A call to action for stakeholders" by Japhet M. Gwakisa and Herry Dhudha. This article, published in the journal Orphanet Journal of Rare Diseases, provides an overview of rare diseases in Tanzania and highlights the need for increased awareness, research, and policy initiatives to address these conditions

• Rare diseases and their impact on the Tanzanian health system" by Idrissa Khalid and Mohamed Mtunguja. This article, published in the Tanzania Journal of Health Research, discusses the challenges of managing rare diseases in Tanzania, including issues related to diagnosis, treatment, and access to care.

• Epidemiology of rare diseases in Tanzania: a systematic review" by Kassim Athumani, et al. This systematic review, published in the journal BMC Public Health, examines the available literature on rare diseases in Tanzania and provides an overview of the epidemiology and burden of these conditions in the country.

• Rare diseases in Tanzania: a policy and legal framework for sustainable development and management" by Japhet M. Gwakisa and Herry Dhudha. This article, published in the journal BMC International Health and Human Rights, highlights the need for a policy and legal framework to address rare diseases in Tanzania, including measures to promote research, diagnosis, and treatment