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WHY RARE DISORDERS?

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.

WHY RARESHARE?

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.

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Create a sense of community for those affected by rare disorders

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Communicate with others that are affected by the same condition

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Contribute condition-related information, experiences, support, and resources

Rareshare news

News articles related to Rareshare and Rareshare communities


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Volunteers are needed for a kidney disease clinical trial.

Publication date: 2 Aug 2022

Community: Membranoproliferative Glomerulonephritis

Complement 3 Glomerulonephritis (C3G) study is looking for volunteers.


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Early Diagnosis of Rare Diseases

Publication date: 23 Jul 2022

Newsletter

Prenatal or neonatal diagnosis of many genetic rare diseases is becoming possible. Should it be done?


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LELANTOS II Duchenne Muscular Dystrophy Study

Publication date: 11 Feb 2022

Community: Muscular Dystrophy, Duchenne and Becker Types


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Clinic for Special Children Podcast

Publication date: 5 Feb 2022

Podcast

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!


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AI to Advance Rare Disease Understanding

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.


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May 2021 Newsletter

Publication date: 27 May 2021

Newsletter

May 2021 Newsletter

  • The Diagnostic Odyssey
  • Ethan and Me Podcast
  • RareShare Disease Summaries


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Rare Diseases as Pre-Existing Conditions

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.