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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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Online Study for Families with Children Having Undiagnosed Medical Conditions or a Rare Disease

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


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Genetic Counseling and Rare Diseases Podcast

Publication date: 7 Mar 2024

Genetic Counseling and Rare Diseases Podcast produced by RareShare.


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Rare Disease (Leap) Day

Publication date: 23 Feb 2024

Rare Disease Day is February 29th.


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Why Rare Diseases?

Publication date: 5 Dec 2023

Newsletter

For rare diseases, a broad-based approach may be essential in increasing awareness and advocating for better outcomes.


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Contact Us

Publication date: 24 Oct 2023


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Role of Physical Therapists in Pediatric Muscular Disorders

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.


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Primary Sclerosing Cholangitis Clinical Trial

Publication date: 9 Sep 2023

Community: Primary Sclerosing Cholangitis

A clinical trial for Primary Sclerosing Cholangitis (PSC) is enrolling patients.


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Health Equity and Rare Diseases Podcast

Publication date: 5 Aug 2023

Podcast


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Neuroimmune Foundation Advocates for Those with Neuroimmune and Inflammatory Brain Conditions

Publication date: 27 Jul 2023

Community: PANDAS


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RareShare Guide on Genetic Inheritance

Publication date: 3 Jun 2023

Guide

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.


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Rare Disease Day 2023

Publication date: 26 Feb 2023

February 28th is Rare Disease Day.


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Seeking volunteers with homocystinuria to join a paid clinical research study. Find out if you’re eligible today.

Publication date: 1 Feb 2023

Community: Homocystinuria

Do you have classical homocystinuria? You could qualify for a new paid clinical study, from home.


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New members welcome! Support re-opened.

Publication date: 24 Dec 2022

New member sign-up and password reset on RareShare has been restored. Email address for support requests provided.


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A Kidney Disease Trial is Enrolling Now

Publication date: 8 Dec 2022

Community: Membranoproliferative Glomerulonephritis (aka Complement 3 Glomerulopathy C3G)

Complement 3 Glomerulopathy study recruitment continues.


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Rare Diseases and Mental Health

Publication date: 4 Dec 2022

The mental health impact of rare diseases is often overlooked.


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Welcome Back!

Publication date: 4 Dec 2022

RareShare is back online.


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Researchers are in need of IgAN (IgA Nephropathy) patients for a clinical trial.

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.


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Volunteers are needed for a kidney disease clinical trial.

Publication date: 2 Aug 2022

Community: Membranoproliferative Glomerulonephritis (aka Complement 3 Glomerulopathy C3G)

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.