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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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Recently added RareShare communities

Publication date: 18 Jun 2021

In response to requests, RareShare has recently added new disease communities for GNB-5 Disorder (guanine nucleotide-binding protein), Glycogen Storage Disease Type 7 and Median Arcuate Ligament Syndrome (MALS).  Those with an interest in these disorders, as patients, family members, caregivers, physicians and researchers are encouraged to join the communities and start a discussion with others having a similar interest.  If there is a rare disorder for which we currently do not have a community, let us know and we can start one for you.  


Rentons

May 2021 Newsletter

Publication date: 27 May 2021

Newsletter

May 2021 Newsletter

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


Huntersyndrome  1

May 15th is MPS Awareness Day!

Publication date: 13 May 2021

Community: Hunter Syndrome

Mucopolysaccharidosis (MPS) is a collection of rare genetic diseases characterized by a deficiency in an enzyme involved in the breakdown of certain long chain sugar molecules.  The accumulation of these molecules over time produces symptoms typically appearing in early childhood and progressing to organ failure and reduced life expectancy.  There are 7 known types of MPS.  MPS II or Hunter Syndrome affects about 1:162,000 babies.  May 15th is MPS Awareness Day.  Learn more about MPS by following the links below.


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Do you have a story to share?

Publication date: 12 Mar 2021

Tell your story in a RareShare podcast or newsletter article.


Raredieaseday2021

Rare Disease Day 2021

Publication date: 3 Mar 2021

Newsletter

Rare Disease Day is observed on the last day of February every year.  It reminds us of the challenges faced by rare disease patients everyday worldwide and inspires us to redouble our efforts to make their lives better.


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Access Mediaplanet's Rare Disease Day Campaign

Publication date: 27 Feb 2021

Mediaplanet UK/Ireland invites you to access a collection of stories about rare disease challenges, treatment and care as part of its Rare Disease Day campaign. The need for better therapeutics is critically important, as stated by Jayne Spink of the Genetic Alliance UK, "Less than 5% of the more than 6,000 rare diseases currently have an available medicine." To read more, follow the online link referenced below on or after March 1.


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Petition Congress to Help Experts Accelerate Rare Treatments

Publication date: 20 Feb 2021

The Familial Chylomicronemia Syndrome (FCS) Foundation is asking those interested in rare diseases to support the HEART (Helping Experts Accelerate Rare Treatments) Act by petitioning their U.S. Congressional representatives. The bill is designed to ensure that rare disease experts and patients are involved in the drug review process for rare disease therapeutics.


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Add your story to Rare Genomics "I am rare because..." blog.

Publication date: 15 Feb 2021

Every rare disease patient or family has an unique story to tell about coping with challenges for a condition that few have heard about. Share yours in a Rare Genomics Institutes blog commemorating Rare Disease Day.


National cancer institute rounded min

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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