Welcome to
Rare not Alone
Rare not Alone is a non-profit organization striving to bring hope to individuals facing rare conditions. Our aim is to improve the living conditions of people with rare diseases by increasing public awareness and promoting volunteering engagement.
Around 350 million people live with rare diseases. That is, the whole population of rare disease patients can make up the third-largest country in the world, approximately the whole population of the United States.
Approximately 70% of them are children. Yet, only about 5% of rare diseases have effective treatments, leaving millions without proper care or even hope to cure. Moreover, since rare diseases' symptoms often overlap with common illnesses, patients with rare conditions frequently undergo misdiagnosis and ineffectivem treatments.
Uncertainty Breeds Sufferings
1. Physical and Developmental Challenges
Without a clear diagnosis and proper treatments, rare diseases can severely impair children's body normal functions, such as movement, speech, and cognitive development. This can prohibit children from engaging in daily activities, attending school, playing sports, and developing normally.
3. Family Impact
If children cannot get a clear diagnosis and treatments, the suffering is not only for children but also for their parents. Seeing their children's suffering is a mental tortures for parents, leading to concerns and sorrows. These mental impact may negatively influence parents' works and life quality.
2. Psychiatric Impact
An unclear diagnosis can lead to frustration—and even desperation—for both children and their parents. When symptoms go unexplained, they can take a heavy toll on a child's already vulnerable emotional state, resulting in not only physical suffering, but also mental and emotional distress, including anxiety, depression, low self-esteem, etc.
4. Financial Burden
When people with rare diseases cannot access the correct diagnosis and treatments, they need to search for medical help in different places, even in different countries. Therefore, they need to spend money not just on hospitals but also on the trip. Even worse, treatments for rare diseases are expensive, raising the financial burden on patients.
Our Mission
The mission of Rare not Alone organization is to comprehensively improve the quality of life of individuals affected by rare diseases, restoring hope and dignity. We firmly believe that every life deserves the equal respect, and no community should be overlooked.
Public Awareness to Rare Diseases
Children with rare diseases often encounter communication barriers. Some rare diseases impair children's speech and lead to language disorders. These impairments can even lead to bullying in academic settings due to lack of public awareness. Increasing public awareness to the types and symptoms of rare diseases can lead to increased public understanding and kindness to children with rare diseases. Instead of ridiculing or even bullying children with rare diseases, people—especially their classmates and teachers—can give them warm supports and proper cares.
Increasing public awareness can prompt early diagnosis. Large public awareness can make parents or teachers find children's symptoms earlier. Thus, children may accept children to accept relevant treatments earlier, which, to the largest extent, prevents symptoms' exacerbation and reduce or even eliminate symptoms. In this way, children's health can be effectively safeguarded.
Public awareness can build support networks. Increased public awareness makes more people likely to join or support patients' community, volunteer organizations, and mental health services that offer emotional or practical help to families.
💡Our Solutions💡
Hospital Art Gallery for Rare Diseases
Boost public awareness of rare diseases through the arts at hospitals,
enabling physicians, patients, and their families to learn about rare diseases.
School Art Gallery for Rare Diseases
Hosting rare disease art exhibitions in schools raises public awareness of rare diseases
and helps destigmatize these conditions, encouraging greater understanding and empathy toward patients living with them.
📢 Establish social media—Rednote and Instagram—to disseminate knowledge about rare diseases.
Common Rare Disease Menu
📝 A short guide of common rare disease types, symptoms, and current treatments.
Volunteering at local communities
In many Pediatrics Department of hospitals, thousands of children, parents, and doctors are bothered by the symptoms of unknown diseases. In local welfare institutes, many children—indeed orphans—with rare diseases are not accepting proper cares and educations.
They often feel alone. Their sufferings are beyond physical pain but also solitude.
💡Our Solutions💡
Volunteering at local medical institutions
❤️ At the local hospital, we want to warmly care and support children with rare diseases within high school students' abilities—leading drawing and coloring sessions, making crafts, and tutoring basic subjects.