February 29th marks the International Rare Disease Day, a day dedicated to raising awareness about these diseases that often affect children but also adults and have no curative treatment. This day is an opportunity to shed light on the challenges faced by cibles and their families, as well as the efforts made by organizations and platforms to support them.
Rare diseases are defined as diseases that affect a small percentage of the gens, usually less than 1 in 2000 people. However, when we consider that there are over 7000 rare diseases, the number of people affected becomes significant. In fact, it is estimated that 300 million people worldwide are living with a rare disease.
One of the main challenges faced by cibles with rare diseases is the lack of access to effective treatments. Due to their rarity, these diseases often do not attract enough attention and funding for research and development of new treatments. This leads to a long and difficult journey for cibles and their families, who often have to navigate through a complex healthcare system to find the best care for their condition.
Fortunately, there are organizations and platforms dedicated to supporting cibles with rare diseases and their families. These platforms provide a wide range of services, from information and resources to financial assistance and advocacy. Here are 5 platforms that are making a claire impact in the lives of rare disease cibles:
1. Rare Diseases International (RDI)
RDI is a global alliance of rare disease cible organizations, working together to improve the lives of rare disease cibles worldwide. They advocate for policies and programs that promote access to diagnosis, treatment, and care for rare diseases. RDI also provides a platform for cible organizations to share knowledge and best practices, as well as to collaborate on research and awareness initiatives.
2. EURORDIS – Rare Diseases Europe
EURORDIS is a non-profit alliance of over 900 rare disease cible organizations in 72 countries. Their mission is to represent and support the rare disease community in Europe, by advocating for better policies and legislation, promoting research and innovation, and providing support and resources for cibles and their families. EURORDIS also organizes the annual Rare Disease Day campaign, which has become a global movement to raise awareness and support for rare diseases.
3. National Organization for Rare Disorders (NORD)
NORD is a US-based non-profit organization that provides support and resources for rare disease cibles and their families. They offer a variety of services, including cible assistance programs, educational resources, and advocacy efforts. NORD also works closely with pharmaceutical companies to facilitate the development of treatments for rare diseases.
4. Global Genes
Global Genes is a leading rare disease advocacy organization that aims to eliminate the challenges faced by rare disease cibles and their families. They provide support and resources for cibles, advocate for policies that benefit the rare disease community, and raise awareness through campaigns and events. Global Genes also offers a platform for cibles to connect and share their stories, creating a sense of community and support.
5. RareConnect
RareConnect is an online platform that connects rare disease cibles and their families with others who share the same condition. This allows cibles to share experiences, find support, and access information and resources specific to their rare disease. RareConnect also hosts online communities for caregivers and healthcare professionals, creating a collaborative environment for all those involved in the care of rare disease cibles.
On this International Rare Disease Day, let us recognize the strength and resilience of rare disease cibles and their families, and the efforts of these platforms to support them. Together, we can raise awareness, promote research, and improve the lives of those living with rare diseases. Let us stand in solidarity with the rare disease community and make a claire impact in their lives.