Search results

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

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

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

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

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

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

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

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

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

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

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

a powerful potential to make a significant, positive impact on knowledge about their members' conditions, the availability and efficacy of treatment, and

quickly. They have the potential to provide much needed quality information about conditions to individuals who are researching them independently. In a lot

Genetic Alliance The Disease InfoSearch section is especially resourceful. 4301 Connecticut Avenue, NW Suite 404 Washington, DC 20008 Phone: 202.966.5557

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

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

are nearby. You can find other organizations that have similar concerns about a body system—for example, both tuberous sclerosis and Sturge Weber syndrome

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

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

in research studies Research community's disregard for consumer concerns about genetic privacy, security of research records and genetic discrimination

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

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

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

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

the message. Internet appeals also offer opportunities to receive feedback about the response to your message. A product called “Constant Contact” uses templates

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

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

regular communication with providers may not prevent misunderstandings about a family's wishes to donate tissue from their loved one. It is important

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

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

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

support opportunities for family members. Although few of us are enthusiastic about creating procedures for this type of event, having a procedure or policy

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

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

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

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

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

need to distribute kits and follow up with individuals and other facilities about specimen collection, as well as maintain secure physical plants with controls

information, and some require assistance in making informed health care decisions about their health plans, professionals, and facilities. Consumers have the right

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

frequently asked questions, and their answers, based on on-line communications about nonprofits (mostly in the United States of America) beginning in the early

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

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

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

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

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

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

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

strongest, most evocative materials you can share. It may include: A fact sheet about your organization, which may list achievements such as leadership publications

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

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

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

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

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

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

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

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

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

informing potential donors of your organization, by informing the community about special needs or initiatives of your organization, and by forming materials

information about your collection on a section for researchers on your website. Including a catalogue will help potential users learn about the types of

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

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

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

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

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

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

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

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

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

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

organization’s organizing documents. Nolo Press has a very nice webpage about starting a nonprofit organization, starting with state activities, and also

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

seriously and have worked very hard. We have some weeks of about ten hours a week, but a normal week is about three “five hours average. We email each other every

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

Program for Nonprofits offers a collection of resources for learning more about state laws governing specific issues (online version links). Also see the

dates entered correctly?) Do the answers make sense? (e.g. Are questions about pregnancy only completed by women?) Are there specific questions vital to

using this link. Special pages Special pages provide useful information about WikiAdvocacy, such as: New Pages Preferences WikiAdvocacy Statistics User

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

point. Self-identification - Understanding how what is said may be true about one's self. Deeper understanding - Getting to the deeper essence of an issue

and availability of accountants. Another potential cost-saving tip - What about asking a larger organization to be your fiscal agent for this event? The

in the response for each. The New York Times article that was published about our illness and organization generated almost no response despite having

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

line is a staffed phone line that can give information immediately, usually about urgent information. The classic hot line model is the crisis clinic. This

a site about a call for papers is a year out of date compared to what’s on the Web page where the announcement is listed. And don’t be shy about asking

do not get approved. This tactic also allows the organization to find out about new families. Small organizations can also choose to approve all messages

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

haven't yet Upload a Youtube about your project. You can talk about why this project is important; provide stories about members and more. Your Youtube

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

an advocacy organization can become an important broker of information about its target condition. The size and goals of your organization will determine

Administration has detailed information about accounting terms and practices, as well as other business information, about business in general. Tax and Finance:

Community Blood and Tissue Banks Genetic Alliance BioBank Educating Membership about Research Facilitating Quality Research Funding Research by Others Getting

that was useful. Our survey was about syndrome natural history information, but we could very well be conducting surveys about patient experience (the diagnostic

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

crucial component of any organization's success. When beginning to think about finances, it is important to first consider all financial resources by recognizing

together - this will enable communication about the priorities and direction of your initiative, as well as consensus about language. It is important to know who

and adults working with them to learn about disability disclosure. It helps young people make informed decisions about whether or not to disclose their disability

appropriate checks and balances with that in mind – it’s not just about the people you know, it’s about whoever will be in those positions in future. I am now beginning

learned a few things about managing/shepherding our online community, and fortunately, we have only had to remove one person, about 12 years ago, for violating

contests. A couple of days ago he sent me a very confrontational message about his desire to “divide and conquer”." Contributions below were gleaned from

Counseling Center in Chevy Chase, MD speak to our group many years ago. He talked about their approach to counseling families and individuals dealing with a medical

clinical research trials. Once you learn more about a specific clinical trial, you can make a decision about participation. Recruitment for clinical trials

hold certain beliefs or make certain decisions about their health care. By distributing information about family health history through the most commonly

otherwise s/he'll need to bring ___ copies with him/her.] 4. [discussion about their equipment needs - what you can provide. You may have/want an equipment

heard. It is important that you share your story - others are happy to hear about your experience with PXE, but it is very important that they have the opportunity

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

affected families in the area and ask them about their local church's child care team. We ask them to ask about providing some assistance - when a local

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

to family health history. Even think about groups that are peripherally related - a gym where people think about fitness, or a library where people might

monumental in building relationships with the FDA and in providing insights about Friedreich's ataxia from the patient's perspective. The group hired a consultant

deductible - we are very clear about this. Funds that go directly to a family are NOT tax deductible. We don’t; make a huge deal about this, but we do not want

for any bias about abortion and for their ability to approach the support situation as an opportunity to guide the prospective parents about how raising

the route we did. Our policy is through Traveler’s Insurance and it cost about $900 a year. There are many places where non-profits can find insurance:

for large numbers of people in the community to be approached and informed about the importance of knowing their family health history. This can also help

NETS and How to Use NETS. Consumers and Researchers Educating Membership about Research Facilitating Quality Research Funding Research by Others Getting

Recommendations Getting Needs onto the Research Agenda Educating Your Membership about Research Patient's Bill of Rights Genetic Privacy Promoting Research on a

use them to help think through the value of a “day of” and how best to go about it if necessary. You might be better off just naming the day yourselves and

Many users will not know how to go about collecting family health history information or may feel uncomfortable about doing so. Suggesting ways to collect

might want to skim through these and jot down questions or concerns you have about some of these issues. As you get closer to starting an organization, or to

a parent (single parent with 4 children) contacted her local newspaper about her wish to go, and the paper published her story on the front page of a

to get more involved in their health care and to talk with their doctors about their medical concerns. The campaign offers tips to help Hispanics prepare

together! Start Using WikiAdvocacy Overview of WikiAdvocacy WikiAdvocacy:About WikiAdvocacy:Community Portal Help

the Public Some tools might focus on the importance of and best ways to go about collecting family health history information while others will have specific

Recommendations Getting Needs onto the Research Agenda Educating Your Membership about Research Patient's Bill of Rights Genetic Privacy Promoting Research on a

clinical research trials. Once you learn more about a specific clinical trial, you can make a decision about participation. Recruitment for clinical trials

Consumers and Researchers Creating a Natural History Survey Educating Membership about Research Facilitating Quality Research Funding Research by Others Getting

important to consider where it should be placed within the wiki. If information about your topic exists already, post the file along with it. If there is no information