Advocacy

Why Advocate for the Vasculitis Foundation

The Vasculitis Foundation works to support positive change in the lives of people who live with vasculitis. Our members work in Washington D.C. to educate Congress about vasculitis and the need to support research funding so that we gain a better understanding of the disease and identify advanced treatments and one day find a cure. In addition, your grassroots advocacy in your community is an important component of the VF’s success.

 


The Grassroots Advocate

Anyone can become an advocate. While we can help you understand the different ways you can advocate change with your elected officials, the most important thing for you to do when you advocate is to be yourself and share your personal story about your experiences with vasculitis.


What You Can Do

You can get involved and become a grass roots advocate in your community and with your elected officials. When you join your voice with the voices of others you become a powerful force for change. There are many advocacy strategies that you can use to become an effective advocate.

In addition to advocating for legislative initiatives, the grass roots advocate can make a difference by working in the community to raise awareness about vasculitis and advocating for improvements in the lives of people with vasculitis. Some strategies you can consider follow.

As advocates, we learn from each other. This can be difficult for VF members because we are a worldwide organization. One way we can help each other regardless of where we live, is to create an on line community where we share our advocacy stories.


Sign up to be a VF Advocate

From time to time, the VF will send an email alerting its members about an important advocacy issue that requires action. Please pay special attention to these requests and take action.

Experienced advocates know that advocacy work is not a one shot deal and that it is ongoing. For more information about what you can do be a VF advocate, check out the bi monthly VF Newsletter, or visit the VF website every month to see if there are updates to the VF’s advocacy news.

Click here to sign up to be a VF Advocate.


Advocate in Your Community

In addition to advocating for legislative initiatives, the grass roots advocate can make a difference by working in the community to raise awareness about vasculitis and advocating for improvements in the lives of people with vasculitis. Some strategies you can consider follow.

1.  Consider joining your local vasculitis chapter or support group. If one does not exist in your area, contact the Vasculitis Foundation about starting a chapter.

2.  Write letters to the editor of your local newspapers to raise awareness about vasculitis.

3.  Participate in Vasculitis Awareness Month activities. The VF will celebrate Vasculitis Awareness Month May 1-31, 2011.

4.  Distribute brochures on vasculitis to your local medical practice and hospitals. Inquire about opportunities to participate in health fairs or other activities to educate health practitioners and the public about vasculitis. Email the VF office to request brochures.

5.  Take action when the VF contacts you for help with an initiative. When you sign up to become an advocate, you will from time to time receive an email asking for you help. Take prompt action if necessary and requested.

6.  Host an event to raise awareness about vasculitis or to fundraise for the VF.

7.  Remember a grass roots advocate is always looking for opportunities to promote the cause and never gives up.

8.  Let us know what you are doing. We may want to build on your efforts by sharing ideas with the membership.


Share Your Advocacy Story

As advocates, we learn from each other. This can be difficult for VF members because we are a worldwide organization. One way we can help each other regardless of where we live, is to create an on line community where we share our advocacy stories.

The VF needs you to share your advocacy story with other members. Whether you have a particular success in calling or writing an elected official, or if your chapter sponsors a VF fundraiser or awareness event, or whatever your VF advocacy story may be, please share your advocacy experiences with other VF advocates.

At the VF, we are family. We help and support each other. When you share your advocacy story, you help other VF members to hear about different ways to advocate to raise vasculitis awareness and you help people to become comfortable with being an advocate.

Click here to share your advocacy story.


Contact Your Federal Elected Officials

Your federal representatives and senators are elected to serve you. You can contact your elected official’s office in several ways, which we outline below.

Your goal is to get to know your elected official and for her or him to get to know you. Help your legislator learn about Vasculitis, the Vasculitis Foundation and important legislation.

1. You can call your elected officials.

2. You can meet with your elected official in the home district, or in Washington, D.C. Make sure to call ahead. Sometimes, scheduling conflicts make it difficult to meet with your legislator; if this is the case, ask to make an appointment to meet with staff, particularly staff assigned to work on health care policy.

3. Consider making a family trip to the nation’s capital. Be sure to call well in advance to make an appointment to meet with your legislator.

4. Send a letter through regular mail. We recommend that you send a letter to the home or local office rather than to the nation’s capital because security procedures delay mail delivery in Washington D.C. Click here to see sample letters.

5. Send an email. Click here to send an email through the VF website.

6. Call your legislator.

Be sure to prepare your message ahead of time. You’ll want to have your talking points all set before any communication with members of Congress.

Click here for help with your message.

Find the contact information for your Representative.

Find the contact information for your Senator.


About Author: admin

Medical Search Tools

Enter your search terms in this tool and the results will open in a new tab or window.

Participation in Clinical Trials is one way you can help advance research into finding better treatments and perhaps even a cure for vasculitis!
Learn how you can participate in clinical trials - National Institutes of Health

VCRC-VF Fellowship Program

The Vasculitis Clinical Research Consortium-Vasculitis Foundation Fellowship is a mentored training program of up to two years for physician-investigators who have a strong interest in vasculitis and wish to pursue a period of specialized training with an emphasis on clinical and/or translational patient-oriented clinical investigation.

The trainee will undertake the Fellowship between 2014-2019 at a VCRC-affiliated site in North America that has an established distinct clinical and research program in vasculitis and availability of senior faculty mentors.

"The Vasculitis Foundation is committed to creating greater awareness and interest in vasculitis," said Joyce Kullman, executive director of the VF. "We hope that the VCRC-VF Fellowship will encourage medical professionals to pursue careers in patient care and research linked to vasculitis."

To support the VCRC-VF Fellowship, please visit the donate page.

Medical Institutions

The Vasculitis Foundation encourages vasculitis patients to seek expert medical care for diagnosis and treatment of the disease. The VF works closely with vasculitis experts and centers around the world to ensure patients have access to the most up-to-date medical care.

The Vasculitis Clinical Research Consortium (VCRC) is an integrated group of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research in different forms of vasculitis and improving the care of patients with vasculitis.

Social Media Icons Powered by Acurax Website Redesign Experts
Visit Us On TwitterVisit Us On FacebookVisit Us On LinkedinVisit Us On Youtube