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Facilitating Quality Research
advocacy organizations are formed is to find answers. If all the answers about treatment, management, and life with your condition were readily available

6 KB (928 words) - 16:28, 26 February 2014
Sibling Support
health system about issues related to siblings of children with disabilities. Woodbine House Publishing company that publishes books about special needs

2 KB (224 words) - 17:43, 5 March 2014
Blogging
Write up those quick stories you tell people when they ask about what you do. The stories about typical patients. The most powerful stories. The ones that

3 KB (461 words) - 16:05, 26 February 2014
Recruiting Celebrities
wish our condition, or a connection to it, on anyone, but we still dream about knowing a famous person with our condition. Though you can't do anything

3 KB (516 words) - 16:35, 26 February 2014
Fundraising Appeals (section About Appeals)
the message. Internet appeals also offer opportunities to receive feedback about the response to your message. A product called “Constant Contact” uses templates

5 KB (765 words) - 17:50, 5 March 2014
Research Model 2: Chromosomal Disorder
we encouraged our members to participate in most any project that we knew about, which led to problems. For example, one researcher was getting blood samples

4 KB (544 words) - 17:00, 26 February 2014
Getting Grants
also hire someone else to find, and write, grants for you. We'll talk more about this later. Communicating with them: Private-sector sources can be accessed

11 KB (1,711 words) - 20:10, 30 July 2018
Autopsies and Tissue Collection (section Communicating with our Health Care Providers about Tissue Donation)
regular communication with providers may not prevent misunderstandings about a family's wishes to donate tissue from their loved one. It is important

4 KB (569 words) - 16:21, 5 March 2014
Registries
start-up guide for registries and repositories This guide asks 53 questions about things to consider when creating a registry or repository. This guide is

6 KB (827 words) - 13:50, 8 October 2020
Conferences, Workshops, and Meetings for Affected Individuals (section Room-sharing and things to think about)
by all at the table and they talk about that for about 15 minutes and then move on to the next question – have about 4 questions in all and it is a nice

31 KB (5,213 words) - 02:09, 21 September 2021
Advocacy Organizations List
nationally and internationally, for current and comprehensive information about carcinoid cancer and related neuroendocrine tumors. The Medical Director

3 KB (394 words) - 16:09, 26 February 2014
Dealing with Death
support opportunities for family members. Although few of us are enthusiastic about creating procedures for this type of event, having a procedure or policy

8 KB (1,263 words) - 18:21, 22 June 2018
Fundraising
are very savvy about social media and are generally members of numerous social media pages. By educating these families with the facts about Barth syndrome

17 KB (2,501 words) - 01:09, 16 April 2016
Funding
List the sources of money that you are pursuing now, and think about them. We'll talk about ways to explore avenues for funding later; here just concentrate

2 KB (329 words) - 17:37, 26 February 2014
Consumer Medical Information
care for all Americans. See its Health Care Reform Resources to learn more about the Patient Protection and Affordable Care Act and important consumer protections

5 KB (589 words) - 17:58, 5 March 2014
Youth to Adult Transition Issues
new at: http://fvkasa.org/about/whatsnew.php Order the Paraprofessional Toolkit or watch the Webinar/Teleconference sharing about the toolkit on KASA’s main

10 KB (1,306 words) - 15:49, 1 August 2018
Determine Goals
try to think about the general theme. Conversely, a developing organization might know exactly what its major goals are but be fuzzy about how to get there

5 KB (807 words) - 14:55, 26 February 2014
Blood and Tissue Banks
need to distribute kits and follow up with individuals and other facilities about specimen collection, as well as maintain secure physical plants with controls

9 KB (1,294 words) - 14:53, 4 February 2016
Patient's Bill of Rights
information, and some require assistance in making informed health care decisions about their health plans, professionals, and facilities. Consumers have the right

4 KB (556 words) - 16:30, 26 February 2014
Travel
helpinghomes@nahhh.org National Patient Travel Center Provides information about all forms of charitable, long-distance medical air transportation and provides

3 KB (362 words) - 15:28, 26 February 2014