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Educating Membership about Research
Bill of Rights Promoting Research Registries Research Models Research Model 1: Recessive Disorder Research Model 2: Chromosomal Disorder Research Model 3:

5 KB (856 words) - 14:37, 12 November 2014
Facilitating Quality Research
Bill of Rights Promoting Research Registries Research Models Research Model 1: Recessive Disorder Research Model 2: Chromosomal Disorder Research Model 3:

6 KB (928 words) - 16:28, 26 February 2014
Benefits of Collaboration with Advocacy Organization Community
Bill of Rights Promoting Research Registries Research Models Research Model 1: Recessive Disorder Research Model 2: Chromosomal Disorder Research Model 3:

5 KB (709 words) - 16:48, 2 August 2018
Research Model 2: Chromosomal Disorder
Bill of Rights Promoting Research Registries Research Models Research Model 1: Recessive Disorder Research Model 3: Dominant Disorder

4 KB (544 words) - 17:00, 26 February 2014
Getting Grants
take away the fear of grant writing. Demystifying Grant Seeking ScanGrants [1]is a free online listing of grants, scholarships and other funding opportunities

11 KB (1,711 words) - 20:10, 30 July 2018
Barriers to Rare Disease Research
Bill of Rights Promoting Research Registries Research Models Research Model 1: Recessive Disorder Research Model 2: Chromosomal Disorder Research Model 3:

8 KB (1,061 words) - 16:40, 2 August 2018
Support for Individuals and Families
professional partners to assist parents in describing their qualifications to (1) serve on Governing Boards, Advisory Boards, Task Forces, workgroups, and other

9 KB (1,380 words) - 15:23, 1 August 2018
Phone Services: Going Beyond the Phone Tree
menus of information. For example, these menus might direct callers to "press 1 for directions," "press 2 for mailing address," and so on. These systems can

5 KB (841 words) - 16:11, 26 February 2014
Youth to Adult Transition Issues
stream on March 3, 10, 17 at 2pm EST. You may access the archived material at [1]. Knowing genetic condition and learning disability went hand in hand with

10 KB (1,306 words) - 15:49, 1 August 2018
Patient's Bill of Rights
Organization Community Facilitating Quality Research Research Models Research Model 1: Recessive Disorder Research Model 2: Chromosomal Disorder Research Model 3:

4 KB (556 words) - 16:30, 26 February 2014
Getting a Biobank or Registry Started
Fortunately, much of this advice can be translated to your registry or biobank: 1. Think about what you have learned in the past year Perhaps you attended a

13 KB (1,925 words) - 17:03, 26 February 2014
Staff
years, so, if the volunteer uses it for 2 years, its current value is only 1/3 of the purchase price. If you paid $800 for it, after 2 years, it’s worth

7 KB (1,087 words) - 20:38, 17 January 2021
National Institutes of Health (NIH)
they participate in NIH panels, work groups, and meetings. Nancy Buelow Alpha-1 Association "I was appointed to the National Institute of Health Director's

8 KB (1,297 words) - 16:11, 26 February 2014
Educating Your Membership about Research
Bill of Rights Promoting Research Registries Research Models Research Model 1: Recessive Disorder Research Model 2: Chromosomal Disorder Research Model 3:

3 KB (356 words) - 16:57, 26 February 2014
Joint Fundraising
we can get someone up pretty quickly. 3.2.1.1.1. See http://CoriPalooza.org for a recent event page. 3.2.1.1.2. Note that the registration button goes

21 KB (3,816 words) - 13:40, 12 August 2015
Obtaining and Maintaining Registry Data
ongoing management of data through their lifecycle of interest to science.”1 Once data are entered, it is essential that data are curated. One strategy

7 KB (1,169 words) - 17:04, 26 February 2014
Fundraising
side presents it to be. Here are some words of wisdom to consider: I would (1) create a memorandum of understanding with the other organization outlining

17 KB (2,501 words) - 01:09, 16 April 2016
Registry and Biobank Ethics and Governance
This information is summarized from a presentation at the 2011 ISBER meeting. 1. Name, purpose, and overall goals of your biobank. 2. Information about research

9 KB (1,314 words) - 17:04, 26 February 2014
Overview (section (1) Survey questions development (DAO))
two secure URLs for their Portals (Demo and Live Portals). Katherine Wayne (1) At this point, DAO should be ready or come with their 'Guides, Privacy Setting

4 KB (482 words) - 18:35, 23 January 2015
Building a Website
rules are for format. Consider guidelines for content, as well. We recommend [1] on the Net Foundation—Code of Conduct. This code has guidelines for authority

19 KB (3,145 words) - 18:55, 30 July 2018