Welcome to
Rare not Alone
Rare not Alone is a non-profit organization striving to bring hope to individuals facing rare conditions. Together, we believe in the strength of collaboration and the importance of rallying more people to stand with and safeguard the rare community.
Around 350 million people live with rare diseases. That is, the whole population of rare disease patients can make up 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.
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.
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.
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.
4. Financial Burden
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.
Finding Antidotes to the Sufferings is imperative
The world holds numerous sufferers of rare diseases across different cities, countries, and continents. Their sufferings are both severe and "invisible". Humans should not take this invisibility for granted, for the rare nature of rare diseases. Providing awareness, supports, and meaningful actions to rare diseases' patients is an urgent action.
Public Awareness to Rare Diseases
Children with rare diseases often encounter communication barriers. Some rare diseases—such as Landau-kKleffner syndrom--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💡
Common Rare Disease Menu
📝 A short guide of common rare diseases' types, symptoms, and current treatments.
Social Media
📢 Establish social media—Rednote and Instagram—to disseminate knowledge about rare diseases.
Art Gallery for Rare Diseases
📝 Boost public awareness of rare diseases through the arts at the educational and medical institutions.
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 and welfare institutions
❤️ At 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.