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
Communicate with others that are affected by the same condition
Contribute condition-related information, experiences, support, and resources
News articles related to Rareshare and Rareshare communities
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.