By clicking on the RareSpace link here R.A.R.E. SPACE... you will be leaving the Children's Rare Disease Network website and browsing the RareSpace community. Thank you for visiting with us. We hope you will find the RareSpace community to be helpful and informative.
RareSpace is a collaborative project to share and advance knowledge about rare diseases among medical professionals, researchers, patients, parents, advocates and the general public.
RareSpace is powered by and hosted on Medpedia.com, a free online technology platform developed in association with Harvard Medical School, Stanford School of Medicine, the UC Berkeley School of Public Health and other leading global health organizations.
To access RareSpace, please visit R.A.R.E. SPACE and click the green button that says, “Join this community”.
When signing up to join RareSpace, we ask that you use your real name and genuine information about yourself and your family. This project is founded on the principle of transparency, and we believe it is important for members to represent themselves honestly and openly in this community.
Within the RareSpace community you will find several tabs:
The “Home” tab shows you the latest activity happening in the community -- similar to the news feed you would see on Facebook and other social networks. Here you’ll see recent questions and answers, timely discussions, related blog posts and new clinical trials. In other words, it is an aggregation of the content in the other tabs, organized by recency. Also in the “Home” tab, below the activity feed, you’ll find related documents that have been uploaded by the community for viewing and comment.
The “Q&A” tab shows all of the questions related to rare diseases that the community has asked. By clicking on a question, you will see all of the answers that the community has provided. Members of RareSpace are encouraged to ask and answer questions about rare diseases here. A question may be asked anonymously, but answers are always connected to the member’s profile (you cannot answer anonymously, for the sake of reliability of the information).
The “News” tab is where you will find related posts from high-quality rare disease bloggers. Members can click on the title of the post to read the full article and comment on it.
The “Discussions” tab is where members can find all of the community discussions. This is similar to a forum or message board. RareSpace members are encouraged to start new discussions about rare diseases and related topics, and to respond to existing discussions with their thoughts or opinions on the issue.
Finally, the “Clinical Trials” tab shows you clinical trials for rare diseases. These can include active trials and trials that are currently recruiting for participants, as well as closed trials. By clicking on “Search more clinical trials” you can refine your results by filtering for location, etc. You can also change the search term (which is defaulted to “rare diseases”)
On the right-hand side of the community page, you will find a place to ask a question about rare diseases at the top, followed by a short list of some of the RareSpace members (click on “see all” for the full list). Below the members is an events calendar, where community members can share upcoming events such as awareness days, fundraising events, support group meetings, etc.
The “Related Organizations” listed in RareSpace (in the right-hand column, under the events calendar) are organizations that have represented themselves with a page on Medpedia. If you are a part of an organization that should be listed here, please visit http://www.medpedia.com/groups/new to create a new organization page.
Finally, you will see the “Community Badge” at the bottom of the right-hand column. This is a special image and link that members are encouraged to put on their blogs or websites, if they have one. Clicking on “get the badge” will show you exactly what the badge looks like, and provides you with the HTML text to copy and paste into your website or blog in order to display the badge.
