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: 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.
Publication date: 12 Mar 2021
Tell your story in a RareShare podcast or newsletter article.
Publication date: 3 Mar 2021
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.
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.
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.
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.
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.
Publication date: 9 Dec 2020
This episode features RareShare itself, and discuss various topics ranging from its goals and how to utilize its networking and informational content. We hope to provide you with a brief, but comprehensive view of the website's features, the diverse and driven volunteers who make this work, and a glimpse of our future plans
Publication date: 2 Dec 2020
The University of Illinois at Chicago has produced a brief resource guide on Understanding the Pros and Cons of Genetic Testing.
Publication date: 16 Sep 2020
What is it like to be a parent of a rare disease child? Your role is not limited to being a full-time parent.
Publication date: 22 Aug 2020
Advocacy groups for NGLY-1 deficiency, USP7, MEPAN and GRIN founded by highly motivated parents.
Publication date: 11 Aug 2020
21 rare disease grants awarded to researchers.
Publication date: 1 Jul 2020
Community: Muckle-Wells Syndrome
We had the pleasure of speaking with Ian Stedman—a lawyer, a father of two, and a rare disease patient and advocate from Toronto. He has Muckle Wells Syndrome, which is a variant of Cryopyrin-Associated Periodic Syndrome, or CAPS. Ian speaks to his experience with the diagnoses, treatment, and general navigation of the health care system as a patient.
Publication date: 25 Jun 2020
Join RAREwithCOVID - A contact registry for Rare Disease patients with COVID-19.
RAREwithCOVID is open to ANY Rare Disease patient who has or had COVID-19.
Publication date: 23 Jun 2020
Community: Cyclic Neutropenia
RareShare has recently become aware of a free genetic screening opportunity for neutropenia patients.
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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.