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Advocate/Volunteer for your good and others!

In addition to advocating for legislative initiatives and the above-mentioned ideas consider:

    * writing letters to the editor of your local newspapers to raise awareness about cryoglobulinemia.

    * participate in Cryoglobulinemia Awareness Month/Day activities (Sept. 23).

    * distribute our brochures to your local medical practice, colleges, schools and hospitals while inquiring about opportunities to participate in health  

      fairs or other activities to educate health practitioners and the public. Email to request information. 

    * take action/initiative and stay in communication with CVO about all efforts you are making or would like to make so we keep everything streamlined  

      and confusion to a minimum. Also, let us know what you are doing. We may want to build on your efforts by sharing ideas with the membership.

    * host an event to raise awareness or to raise funds for CVO outreach.

Cryoglobulinemia Vasculitis

CVO advocates/volunteers are always looking for opportunities to promote the cause, work together as a team, think the best of each other and never give up. Share Your Advocacy Story. Whether you have a particular success in calling or writing an elected official, if your group sponsors a CVO fundraiser or awareness event, or whatever your story may be, please share. We are a CVO family doing our best to help and support each other. When you share your story, you help other members with ideas and different ways to advocate to raise awareness and you help people to become more aware.

Research and Education

This site helps to educate and inform patients and those who love them: Videos, links, CVO spokespersons, member stories and the picture page have been found to be most enlightening. We have radio programs pertaining to all aspects of research, personal stories and knowledge. Periodically survey results and reports will be published to help medical groups and patients alike stay on the cutting edge of what is happening in the cryo world and in patients' lives. The links page will connect you to partner groups, like the vasculitis foundation and CoRDS that are making great strides to improve research, possibilities and finding a cure.

Your federal representatives and senators are elected to serve you.

Contact your elected official’s office and get to know them:  

    * Help your legislator learn about Cryoglobulinemia, CVO and our efforts to help caretakers, patients and those who love them.

    * 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


      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.

    * 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.

    * Send an email and 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.

    *Call your legislator. Prepare your message you’ll want to have your talking points all set before any communication with members of Congress.

Why Advocate/Volunteer?​

We need you. Anyone can become an advocate. Share your personal story about your experiences with cryoglobulinemia, join the support group, share  our website and the videos

By joining the CVO advocacy and volunteer team you will be joining with others who understand what it feels like to have an “invisible illness” or be a friend, family or caretaker. There are many in the group waiting to welcome you and offer hope, courage and friendship. There is no fee, just a suggested donation. Join our private/closed (posts only viewable to members) Facebook support group, and stay connected and up to date with our CVO family outreach efforts.

Advocate in your community, with your elected officials, in Washington... join with the voices of others with a rare disease and we can be a powerful force for change, education and awareness while championing improvements in the lives of patients/families. As advocates, we learn from each other. One way we can all stay connected is through our online community where we share our advocacy stories and team work. Sign up to be a CVO Advocate/team member.

Sign up for our CVO Newsletter and we will alert you with research, inspiring stories and important advocacy issues that require action. Advocacy is not a one-shot deal. It is ongoing, so please visit our CVO website every month and share it with friends!













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