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test-community

What is test-community?

 

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Community post test. Created by RareshareTeam
Last updated 13 Sep 2023, 02:30 AM

Posted by RareshareTeam
13 Sep 2023, 02:30 AM

Can you read this post? Reply with your own post.

Ray

Posted by RareshareTeam
13 Sep 2023, 02:29 AM

This is a message to test our community post function.

test 6/4/21 Created by sydweakley
Last updated 4 Jun 2021, 07:46 PM

Posted by sydweakley
4 Jun 2021, 07:46 PM

test

test Created by danube.phan
Last updated 11 Mar 2021, 05:52 AM

Posted by danube.phan
11 Mar 2021, 05:52 AM

test

New Post Created by MarinaMit
Last updated 15 Jul 2020, 07:32 PM

Posted by MarinaMit
15 Jul 2020, 07:32 PM

Hello test test

test 7/13 Created by tychtych
Last updated 14 Jul 2020, 05:15 AM

Posted by tychtych
14 Jul 2020, 05:15 AM

//-//-//

test Created by wb
Last updated 7 Jul 2020, 11:34 PM

Posted by wb
7 Jul 2020, 11:34 PM

I'm Will. This is a test

test by Yongjian Created by ypan
Last updated 21 Jun 2020, 09:21 PM

Test Post on 06/16/2020 Created by evgenii.strepetov
Last updated 17 Jun 2020, 03:31 AM

Posted by evgenii.strepetov
17 Jun 2020, 03:31 AM

test 5/28/2020 Created by shivangp
Last updated 28 May 2020, 09:01 AM

Posted by shivangp
28 May 2020, 09:01 AM

Test messsage on 5/28/2020

Test 3/12/2020 Created by shivangp
Last updated 18 Mar 2020, 02:06 AM

Posted by shivangp
18 Mar 2020, 02:06 AM

Test 3/17/2020 for email 

Community Resources
Title Description Date Link
Test

test

06/14/2017
test

test 

06/14/2017
test

test

07/12/2017
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test

07/04/2017

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

Community Leaders

shivangp2

Test profile

 

Expert Questions

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Community User List

wb

This is the account for the RareShare team.

test

test profile

TEST


Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

test

Created by shivangp | Last updated 17 Aug 2019, 09:44 PM

Test message

Created by shivangp | Last updated 1 Feb 2019, 06:34 AM

test 10/23/2018

Created by shivangp | Last updated 24 Oct 2018, 02:13 AM

test

Created by shivangp | Last updated 26 Jan 2018, 08:43 PM

test

Created by shivangp2 | Last updated 5 Sep 2017, 12:58 AM

test

Created by shivangp | Last updated 5 Sep 2017, 12:46 AM

Test

Created by shivangp | Last updated 21 Mar 2017, 03:19 AM


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

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.