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Developing a Governance Board (section Policies for Changing Board Membership - Recruiting or Replacing Board Members)
think will create the right culture for your board. Genetic Alliance recognizes the importance of board development for its member groups. To help these organizations

11 KB (1,751 words) - 01:55, 29 August 2016
Biobank and Registry Financial Management (section Fundraising for your Registry or Biobank)
recovery to pay for physical materials and reagents, and utilize other funding sources (e.g. grant funding) for salary support. Others use a fee for service model

5 KB (777 words) - 17:03, 26 February 2014
Vision (section Development)
Characterize Resources Characterize Resources: Leadership Characterize Resources: Mentor Characterize Resources: Volunteers Characterize Resources: Expertise

1 KB (171 words) - 17:53, 26 February 2014
National Institutes of Health (NIH)
Getting an ICD-9 code added for your condition Getting Needs on Government and Legislative Agendas Policy Tools & Resources

8 KB (1,297 words) - 16:11, 26 February 2014
BioBanks (section Resources)
Appeals General Resources Information about Rare Genetic Diseases Matching Resources Meet Your Neighbors & Organizations Publications Resources for Nonprofits

3 KB (239 words) - 14:51, 4 February 2016
Donations
Collaborative, http://usher1f.org. We are working to raise funds for research for a cure for Usher Syndrome Type 1F. Usher Syndrome is the leading cause of

37 KB (6,142 words) - 14:42, 22 June 2018
Drug Development (section Externally Led Patient Focused Drug Development Resource Links)
led ELPFDD for 3 diseases using the Platform for Engaging Everyone Responsibly (PEER) system. Some communities use PEER for registries, some for campaigns

3 KB (300 words) - 18:24, 8 April 2018
Getting a Biobank or Registry Started (section Resolutions for your Registry or Biobank)
advocacy organizations. Advocacy organizations are key stakeholders for the development of registries and biobanks, and they are vital to the advancement

13 KB (1,925 words) - 17:03, 26 February 2014
Translational Science
the general order of drug development while demonstrating its flexibility. NETS also provides toolkits of definitions, resources, and educational materials

1 KB (165 words) - 16:15, 26 February 2014
Social Networking
organization. I think for now it will continue to be most appropriate for our condition. I see a lot of benefits to the FB platform for our patient families

34 KB (5,620 words) - 15:15, 1 August 2018
Creating a Natural History Survey
while we build support for a full longitudinal registry. I wouldn't suggest Survey Monkey for a longitudinal registry, only for a one-time survey. Survey

7 KB (1,035 words) - 16:27, 26 February 2014
Biobank and Registry External Relations (section Strategies for Engaging Your Community)
calendar. For more information on communication plans and non-profit marketing, visit Network for Good. Communicating openly is a key strategy for a successful

19 KB (2,693 words) - 17:03, 26 February 2014
Blood and Tissue Banks
create a repository for blood and tissue. A blood and tissue bank is an archive where specimens (DNA, blood, and tissues) can be stored for use in research

9 KB (1,294 words) - 14:53, 4 February 2016