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

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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

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Recruiting
In this section, we'll talk about the recruitment of various resources. Publicity and General Media Media Tips Recruiting Celebrities Health care Providers

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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

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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

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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

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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

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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

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Donations
inexpensive way to reproduce information about the disorder and communicate with the families and health professionals about various resources and meetings we

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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Sibling Support
health system about issues related to siblings of children with disabilities. Woodbine House Publishing company that publishes books about special needs

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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

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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

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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

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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

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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

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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

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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

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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

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Advocacy Organizations List
nationally and internationally, for current and comprehensive information about carcinoid cancer and related neuroendocrine tumors. The Medical Director

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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

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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

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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

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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

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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

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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

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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

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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

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Travel
helpinghomes@nahhh.org National Patient Travel Center Provides information about all forms of charitable, long-distance medical air transportation and provides

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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

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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

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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

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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

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Mentors
A mentor is someone who offers advice about specific structures or functions (as opposed to actually performing tasks themselves). Mentors come in many

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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

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Characterize Condition
help clarify your organization's mission and set realistic expectations about the commitments that volunteers can make. Some differences clearly impact

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Newsletters and Bulletins
congressional representatives about appropriations or legal protections. Or, there may be an important research announcement about which you want to inform

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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

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Research Models
Genetic Alliance BioBank Consumers and Researchers Educating Membership about Research Facilitating Quality Research Funding Research by Others Getting

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Orphan Drug Application
the field is right now: What is known about the etiology and manifestation of the condition? What is known about the therapy? How does it relate to the

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Advisory Boards
medical and research communities, and can help to ensure that information about the condition that is disseminated by the organization is accurate and appropriate

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Brochures and Fact Sheets
membership. They also may be critical to disseminating accurate information about your condition—particularly if it is one that has been described on the basis

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Setting Up A National Conference
together to strive for a cause that they are all passionate about. You can learn more tips about starting your own national convention on our Conferences

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Starting Points for Planning Materials
whatever the reason. People call to confirm addresses, get basic information about your organization or the condition it supports, make a request that involves

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General Resources
is written in a "Frequently Asked Questions" format and answers questions about the ADA, the ADA Amendments Act, the Rehabilitation Act, Social Security

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Genetic Privacy
Genetic Alliance BioBank Consumers and Researchers Educating Membership about Research Facilitating Quality Research Funding Research by Others Getting

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Tax and Finance
In this section, we'll talk about Tax and Finance for advocacy organizations. Setting up Useful Systems Financial and Summary Statement State-Specific

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State Registration
Solutions for years and they have been great! I never even have to think about our filings. They are seamless. Copilevitz & Canter, LLC Labyrinth, Inc.

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Characterize Resources
know outside of your organization as well as within its membership. Think about their skills and interests. Your neighbor the artist, a friend from your

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Family Health History
A peek into the past can reveal a lot about your future. Family health history is the story of diseases that run in your family. It is one part of the

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Connecting Individuals
group of patients and families (for our syndrome, relatively large means about ten people!), we try to hold small support meetings. This is quite expensive

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Publisher Recommendations
You will be shocked at the different prices. You can put in a small plug about your cause and sometimes they give you better rates. I got a scientific poster

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Volunteers
resources for nonprofit organizations' volunteer programs. To learn more about the liability laws in your state for non-profits and volunteers, check out

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Financial and Summary Statement
Statement of cash flows Nonprofits must also be able to provide information about expenses by functional classification (program services, supporting services)

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Your Organization's Name Is Important (section General Comments about rebranding)
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

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Support for Individuals and Families
contribute to a thread. I think a forum member (new or old) asking a question is about so much more than simply seeking information. If they are like me, they are

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BioBanks
Preparedness Fundraising Fundraising Appeals General Resources Information about Rare Genetic Diseases Matching Resources Meet Your Neighbors & Organizations

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How to Obtain Donated Office Space
A qualified conservation contribution (defined later). For information about how to figure the value of a contribution of a partial interest in property

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Media Access
have an advantage. That may not be a requirement, however. We'll talk more about identifying likely celebrities and making contact with them later. Do you

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Working with a Lawyer
the other criteria and you want to proceed, don't be shy about asking detailed questions about how you will be billed. At a minimum, you should know the

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Articles, Letters, and Other Media for Lay Publication
informing potential donors of your organization, by informing the community about special needs or initiatives of your organization, and by forming materials

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Biobank and Registry External Relations (section Have You Updated your Community about your Progress Lately?)
information about your collection on a section for researchers on your website. Including a catalogue will help potential users learn about the types of

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Registry and Biobank Ethics and Governance
will govern/ make decisions about your collection? It is critical to understand who has the power to make decisions about your registry or biobank. Many

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State-Specific Issues
donations regionally or nationally can visit this website for information about the Unified Registration Statement, an alternative to the respective registration

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Clinician- and Researcher-Focused Materials
Phelan-McDermid Syndrome Foundation’s goals is to increase physician’s knowledge about how to take care of patients with Phelan-McDermid Syndrome (PMS). Actually

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Getting a Biobank or Registry Started
talk about SMART goals – SMART is an acronym for Specific, Measurable, Attainable, Realistic, and Timed. While this is a valid way to think about your

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Defining Our Terms
themselves have been challenging in some cases. Just the language we use to talk about advocacy presents a challenge. In the advocacy community, we have spent a

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Matching Resources
Preparedness Fundraising Fundraising Appeals General Resources Information about Rare Genetic Diseases Meet Your Neighbors & Organizations Publications Resources

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Emergency Preparedness
This page features a clickable map by state or federal region to learn about AAP disaster preparedness contacts and initiatives. Pediatric Patient Safety

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Councils and Other Advisory Bodies
papers. These councils may be part of the alliances and coalition we talked about above. They may also report to government agencies or to professional associations

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The Kitchen Table Is a Good Place to Start: Klinefelter Syndrome and Associates
this genetic condition on their own. This quickly became less about our family and more about a universal problem. Those first letters were full of anxiety

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Research Model 3: Dominant Disorder
Genetic Alliance BioBank Consumers and Researchers Educating Membership about Research Facilitating Quality Research Funding Research by Others Getting

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Attaining 501(c)(3) Status (Not-For-Profit Determination)
organization’s organizing documents. Nolo Press has a very nice webpage about starting a nonprofit organization, starting with state activities, and also

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Why Go There?
learn a lot about your "competition" - organizations working on the same disease or group of diseases. Find their mission statements. Learn about their activities

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Getting Needs on Government and Legislative Agendas
wonderful opportunities for you to strengthen your own organization by learning about the successes and pathways of others. The two major forms of combined efforts

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Educating Your 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

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Considering Starting a Support Group for a Condition that Already Has One?
organization, think about helping them improve rather than competing. If you think that your offer might not be accepted by the leadership, think about taking a written

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Policy Tools & Resources
reach them. Communication with your Congressional Representation can bring about great change and progress. These are a few of the many ways to learn how

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Advocacy Resources
Preparedness Fundraising Fundraising Appeals General Resources Information about Rare Genetic Diseases Matching Resources Meet Your Neighbors & Organizations

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History of Advocacy Organizations and Genetic Alliance
voluntary health agencies, medical researchers, and individuals concerned about orphan diseases and orphan drugs. In 1983, a national symposium, "Genetic

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The Power of Advocacy Organizations
make their aggregate voices heard. Though each organization is concerned about a very specific and sometimes isolated aspect of their particular genetic

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Genetic Alliance BioBank
Advocacy Organization Community Consumers and Researchers Educating Membership about Research Facilitating Quality Research Funding Research by Others Getting

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Genetic Alliance (section About Us)
forms both the process and product for Genetic Alliance. You can learn more about us on our Genetic Alliance website. Defining Our Terms The Power of Advocacy

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Research Model 1: Recessive Disorder
Genetic Alliance BioBank Consumers and Researchers Educating Membership about Research Facilitating Quality Research Funding Research by Others Getting

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Protecting Member Privacy
privacy issues deserve focus here as well. Journalists producing stories about health care reimbursement, genetic services, or other topics whether related

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Promoting Research
Genetic Alliance BioBank Consumers and Researchers Educating Membership about Research Facilitating Quality Research Funding Research by Others Getting

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Biobank Sample Collection
events are an excellent opportunity to bring your community together, educate about the importance of research, and collect samples. Tissue is collected exclusively

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Leadership
Later on, we'll consider why the other boards might be helpful. As you think about their roles, strengths, and weaknesses, consider issues like geographical

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International Offices
establish means of navigating through it. Various locations have separate rules about qualifications for non-profit agencies, and there are guidelines for international

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