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