Search results

Becoming the Organization You Imagine
pitfalls. Think realistically about your various sources of income: can they be improved, can you find new ways to think about them, can you ask more of these

3 KB (422 words) - 15:24, 26 February 2014
Internet and Web Resources (section Tell Me about Blogging)
using it effectively and beneficially. This guide will give you some ideas about where to find the necessary resources for effective recruiting on the Web

6 KB (954 words) - 18:19, 5 March 2014
Recruiting
In this section, we'll talk about the recruitment of various resources. Publicity and General Media Media Tips Recruiting Celebrities Health care Providers

951 bytes (101 words) - 16:00, 26 February 2014
Media Tips
for this. Assume that the media or the public knows nothing about your condition or about genetics in general. Frame your message using accurate and positive

6 KB (868 words) - 16:34, 26 February 2014
Harnessing the Resources That Are Hard to Measure
similar idea about what is needed and how to get there will be more successful than organizations in which people have very different ideas about what the

4 KB (699 words) - 15:46, 26 February 2014
Social Networking
absolutely nothing about what happens behind the curtain. I recently heard something that stuck with me. It was on a NPR program about Facebook moving to

34 KB (5,620 words) - 15:15, 1 August 2018
Attending Professionals' Annual Meetings
can be important for a number of reasons. You will learn more about the condition and about the specialties that serve the condition, and gain credibility

12 KB (1,863 words) - 16:36, 26 February 2014
Helping Your Membership Help Your Group
a resource. Most of the time, when new organizations think about membership, they think about building it. Getting is a key activity of your work. Your

9 KB (1,407 words) - 20:15, 23 February 2015
Donations
inexpensive way to reproduce information about the disorder and communicate with the families and health professionals about various resources and meetings we

37 KB (6,142 words) - 14:42, 22 June 2018
Health care Providers and Specialists
is easy to distribute, such as a brochure, they can tell their patients about you. Don't depend on busy clinicians to make a pitch for you—make sure your

4 KB (588 words) - 16:35, 26 February 2014
Educating Membership about Research
to have—and provide—information about it. Your members may be eager to participate in research. They may have heard about genes being identified for your

5 KB (856 words) - 14:37, 12 November 2014
Getting Needs onto the Research Agenda
a powerful potential to make a significant, positive impact on knowledge about their members' conditions, the availability and efficacy of treatment, and

1 KB (156 words) - 16:29, 26 February 2014
Building a Website
quickly. They have the potential to provide much needed quality information about conditions to individuals who are researching them independently. In a lot

19 KB (3,145 words) - 18:55, 30 July 2018
Information about Rare Genetic Diseases
Genetic Alliance The Disease InfoSearch section is especially resourceful. 4301 Connecticut Avenue, NW Suite 404 Washington, DC 20008 Phone: 202.966.5557

2 KB (236 words) - 15:42, 26 February 2014
Publicity and General Media
someone in your organization have media experience? Be sure to let media know about every event you create, including all your fundraisers and meetings. Don't

21 KB (3,306 words) - 16:40, 1 August 2018
People and Roles
need mentorship in those areas. All the same notes about working with any volunteer apply be clear about the kind of support you need and the way your organization

7 KB (1,019 words) - 15:30, 22 June 2018
Funding Research by Others
are nearby. You can find other organizations that have similar concerns about a body system—for example, both tuberous sclerosis and Sturge Weber syndrome

5 KB (716 words) - 16:28, 26 February 2014
Using Search Tools to Get Found
You can be proactive about gathering new members via the Web. Make sure you are listed on all of the major databases on the Net. Genetic Alliance, NORD

5 KB (785 words) - 16:41, 26 February 2014
Publications
bibliography to assist parents and professionals identify books that are written about or include characters that have a disability. The Parent’s Helper: Who to

3 KB (334 words) - 17:47, 5 March 2014
Barriers to Rare Disease Research
in research studies Research community's disregard for consumer concerns about genetic privacy, security of research records and genetic discrimination

8 KB (1,061 words) - 16:40, 2 August 2018
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
Resources for Nonprofits
frequently asked questions, and their answers, based on on-line communications about nonprofits (mostly in the United States of America) beginning in the early

3 KB (366 words) - 17:46, 5 March 2014
Internet Services: Websites, Chat Rooms, and Newsgroups
behaves in a very similar way. For more about blogging, see the discussion in "Internet and Web Resources" and "About this site." Finally, Protecting Message

6 KB (872 words) - 16:53, 26 February 2014
Internet Services: Mailing Lists
by knowing something about people. That isn't simply built upon sharing the bad times but more importantly about fellowship about the good times. When

15 KB (2,396 words) - 19:18, 7 May 2014
Choosing an Internet Service Provider
these: How much storage space do you need? A moderate size website can use about 200 megabytes of storage space, especially if you offer large files (such

4 KB (565 words) - 15:48, 26 February 2014
Mentors
A mentor is someone who offers advice about specific structures or functions (as opposed to actually performing tasks themselves). Mentors come in many

1 KB (197 words) - 17:38, 26 February 2014
Maintaining Your Membership
Since launch, we have received over 50 requests for membership of the EDNF, about ten times the volume we'd normally receive in that members are signing up

9 KB (1,265 words) - 15:52, 26 February 2014
Characterize Condition
help clarify your organization's mission and set realistic expectations about the commitments that volunteers can make. Some differences clearly impact

5 KB (695 words) - 14:55, 26 February 2014
Newsletters and Bulletins
congressional representatives about appropriations or legal protections. Or, there may be an important research announcement about which you want to inform

12 KB (2,118 words) - 13:46, 29 October 2014
Press Kits
strongest, most evocative materials you can share. It may include: A fact sheet about your organization, which may list achievements such as leadership publications

2 KB (250 words) - 16:23, 26 February 2014
Research Models
Genetic Alliance BioBank Consumers and Researchers Educating Membership about Research Facilitating Quality Research Funding Research by Others Getting

704 bytes (73 words) - 16:18, 26 February 2014