Join us at our Annual Conference!
For more information on our Annual Conference, please visit our
Annual Conference Page!
For more information on our speakers, please visit our
RNE Data Mapping Project
We need to put rare diseases on the map!
RNE has convened a team from academia, industry, and the non-profit space to gather simple location data across all rare diseases in the New England region. This data will give the community added credibility and leverage to inform and educate legislators, industry leaders, healthcare systems, payers, and other stakeholders.
Rare Connections
RNE’s patient and caregiver support groups are live! Virtual sessions meet on the second Tuesday of each month. Click below to learn more and sign up for one of our upcoming meets.
Donate to RNE
RNE is a nonprofit that runs with the help of sponsors and donors like you! Your contributions bring together patients, caregivers, clinicians, and professionals in the rare disease community.
What is a rare disease?
A rare disease is a disease or condition that affects less than 200,000 people in the United States.
According to the NIH, over 6,500 different rare diseases exist in the US. More than 30 million adults and children in this country (about 10% of the population) are affected by a rare disease, a complex medical disorder, or an undiagnosed condition.
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According to a 2015 survey, patients reported needing to see an average of 8 different physicians before finding the doctor who diagnoses them. Patients waited an average of 6 to 8 years before being correctly diagnosed. Many of these patients report receiving several incorrect diagnoses, with incorrect treatment plans, before being identified as a rare disease patient.
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Researchers receive little funding to help identify causes and potential treatments of rare disorders. For many rare diseases, not even one FDA-approved treatment is available in the US. Finding qualified specialists is difficult. About half of rare disease patients report hearing conflicting information about their disease and possible treatment options, and many struggle to find physicians and clinics with the knowledge and experience needed to care for their rare disease. In fact, about half of patients surveyed had to provide their physicians with disease-related information on their own.
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Over half of US rare disease patients report a reduced quality of life along with their diagnosis, related to large medical expenses, difficulty in finding treatments and medical care, lack of education and awareness about their disease, feelings of isolation and worry, loss of jobs and careers, long-term disability and planning for the future, difficulty with community, school access and accommodations, finding and utilizing resources, and more.
Stay Connected.
Sign up to our emailing list to get updates on RNE and rare disease news, events, and more.
Follow, like, and comment on social media to see what else is happening at RNE! We’d love to hear from you.
"RNE came into my family's life just when we needed the organization the most."
— Anne, Parent
Rare disease is diverse.
At RNE, we strive to bring solutions to inequalities that happen too frequently in our healthcare system, especially to those with rare and complex diseases.
We understand the hurt that comes along with feeling excluded and the medical and physical implications when healthcare is not tailored and informed. It is our goal that through our resources and programs, no one is treated like an outsider due to their mental or physical differences. We fight for a system in which everyone receives appropriate and equitable care. We are contributing to a more inclusive rare disease space that recognizes rare disease in its many shapes and forms.
Whether we are religious, spiritual or atheist, and regardless of how we identify ourselves - by race, by gender, by ethnicity, by sexual orientation, by nationality, by religion, by socioeconomic status, by age - all humans should agree to acknowledge the value, the necessity, and the priority, of this one globally-relevant mantra: do unto others as you would have them do unto you.
RNE has created a Diversity Committee to join the voices of our community members and work together to create more inclusive resources. We hope this opens new dialogues and that people feel comfortable providing us with crucial feedback. We seek to learn, build, grow and flourish together as equal members of a just and diverse society.
