Even though there are 7,000 known rare conditions, many of the 300 million affected patients around the globe feel alone. RareShare was founded in 2008 to give these people and their loved ones a sense of community; a place to sympathize, celebrate, and share their experiences and expertise, together.
RareShare is built on a premise that sharing information is good, especially when it comes to information about rare diseases. The more you share the more you have an opportunity to help others whose lives have been touched by rare disease. By joining our community of support and sharing information about your experience, you will help others, including researchers, better understand your disease. Please keep in mind that the content and extent to which you share is ultimately your choice and responsibility.
Create a sense of community for those affected by rare disorders
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Contribute condition-related information, experiences, support, and resources
News articles related to Rareshare and Rareshare communities
Publication date: 4 Jun 2025
Chromosomal positioni information and naming conventions can be somewhat obscure. Here's a quick guide to help understand how the names are derived.
Publication date: 18 Apr 2025
RareShare is looking for stories that can be posted in its newsletter or which can be used in its podcast series.
Publication date: 8 Mar 2025
Rare disease patients in the U.S. are encouraged to participate in a National Organization for Rare Diseases (NORD) research study intended to capture data on how rare diseases impact life, ranging from healthcare access and treatments to emotional, social and financial difficulties.
Publication date: 14 Feb 2025
A call to action for Rare Disease Day.
Publication date: 3 Dec 2024
Rare diseases are more common than you may think, and RareShare taps into AI.
Publication date: 23 Sep 2024
Support for clinical Trials Advancing Rare disease Therapeutics (START) program to accelerate drug and biological products for rare diseases.
Publication date: 18 Jul 2024
Rare disease parents are invited to particpate in a paid survey.
Publication date: 22 Jun 2024
Getting to a correct diagnosis for a rare disease can be a years long ordeal known as the "Diagnostic Odyssey." Help University of North Carolina Greensboro researchers compile survey results from real patients by participating in an online survey.
Publication date: 16 May 2024
Join a study investigating challenges and experiences of families with a child having a rare disease or undiagnosed medical condition
Publication date: 7 Mar 2024
Genetic Counseling and Rare Diseases Podcast produced by RareShare.
Publication date: 5 Dec 2023
For rare diseases, a broad-based approach may be essential in increasing awareness and advocating for better outcomes.
Publication date: 19 Sep 2023
An article posted on the Rare Genomics Institute website discusses the valuable role of physical therapists in pediatric muscular disorders.
Publication date: 9 Sep 2023
Community: Primary Sclerosing Cholangitis
A clinical trial for Primary Sclerosing Cholangitis (PSC) is enrolling patients.
Publication date: 27 Jul 2023
Community: PANDAS
Publication date: 3 Jun 2023
RareShare's content development team has prepared a summary of terms and concepts used to explain the role of genetics in the development and treatment of rare diseases.
Publication date: 1 Feb 2023
Community: Homocystinuria
Do you have classical homocystinuria? You could qualify for a new paid clinical study, from home.
Publication date: 24 Dec 2022
New member sign-up and password reset on RareShare has been restored. Email address for support requests provided.
Publication date: 8 Dec 2022
Community: Membranoproliferative Glomerulonephritis (aka Complement 3 Glomerulopathy C3G)
Complement 3 Glomerulopathy study recruitment continues.
Publication date: 4 Dec 2022
The mental health impact of rare diseases is often overlooked.
Publication date: 2 Sep 2022
Community: IgA Nephropathy
Researchers are currently studying an investigational IgAN oral drug aimed at slowing the progression of kidney disease symptoms. Volunteers are needed — learn more today via
Antidote.
Publication date: 2 Aug 2022
Community: Membranoproliferative Glomerulonephritis (aka Complement 3 Glomerulopathy C3G)
Complement 3 Glomerulonephritis (C3G) study is looking for volunteers.
Publication date: 23 Jul 2022
Prenatal or neonatal diagnosis of many genetic rare diseases is becoming possible. Should it be done?
Publication date: 11 Feb 2022
Community: Muscular Dystrophy, Duchenne and Becker Types
Publication date: 5 Feb 2022
Serving the Amish and Mennonite communities in Central Pennsylvania, the Clinic for Special Children provides counseling and healthcare for rare disorders affecting the local population. In doing so, it has become a recognized leader in the treatment and scientific understanding of conditions such as Maple Syrup Urine Disease. Listen to an in-depth, fascinating story of the clinic, its goals, accomplishments and challenges as told by current staff members. You'll almost certainly agree that it is truly a special place!
Publication date: 3 Nov 2021
Artificial intelligence (AI) will inevitably revolutionize the diagnosis and treatment of rare diseases. Taken as a whole, the number of rare diseases, their diverse characteristics and complex causes comprise an ever expanding data set that will require computational help to decipher. An estimated 40% of rare disorders are misdiagnosed at the outset, leading to incorrect management and treatment delays.
As rare conditions are frequently first noticed in young children, the consequences of misdiagnosis and delayed treatment can profoundly impact disease severity over a lifetime.
Publication date: 27 May 2021
May 2021 Newsletter
Publication date: 11 Dec 2020
Most rare diseases are “pre-existing” conditions. Depending upon where you live and your financial circumstances, this may disqualify you from health insurance benefits and continuous medical treatment. At face value, this is an absurdity. Many diseases, not just rare ones, manifest themselves over years. This includes cancer, heart disease, diabetes, high blood pressure, allergies to name a few. Initiating treatment of such diseases at their most acute symptomatic phase is often too late and ignores the fact that preventative measures could have been taken.
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Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.