Advocacy and You

Part 3: Keeping Posted

If not me...Who? If not now ....When? Keeping up to date with your health issues is paramount in maintaining the best health care possible for you and your family. Recently President Clinton is quoted as saying " We’ve made a lot of progress in health care reform, but we’ve got a long way to go. It hurts us all if we are shelling out money for health care coverage and then we can’t get quality health care." How can we follow the changes that are occurring every day that effect the health care we receive?

There are several sites available that keep us abreast of proposed changes to health care legislation. The National Organization for Rare Disorders (NORD) provides a periodic report titled NORD ON-Line. The staff at NORD maintains constant contact with the Federal Legislature. They work to keep us informed about any and all medical issues that will affect our health care. The task is monumental considering the many different committees that have an impact on health care: the U.S. House and Senate Appropriations Subcommittees on Labor, Health, and Human Services and Education, Federal Drug Administration, Senate and House Subcommittee on Agriculture, Rural Development, Food and Drug Administration and Related Agencies, Social Security Administration, and several others. There are seventeen Senate and nineteen House of Representative committees that have the power to generate legislation. The best time to affect an issue is as early in the process as possible. NORD ON-Line is an excellent way to keep in touch with impending health issues.

NORD may be contacted at +1 (203) 746-6518 or on the web at http://www.nord-rdb.com.

The Alliance Alert, published by the Alliance of Genetic Support Groups, is a monthly publication dedicated to providing timely and useful material to its constituency. Included in the Alliance Alert are several website resources. The Alliance may be contacted at 1-800-336-GENE or on the web at http://www.geneticalliance.org.

Other web sites of interest are:

http://www.towson.edu/~bhalle/disable.html. This site covers Disability Issues, the Media, and Communication. The National Parent Network on Disabilities (NPND) maintains a site at www.npnd.org. Issues affecting Disabilities, SSI, Consumer Health and the President’s Advisory Commission on Consumer Protection and Quality in the Health Care Industry are the focus of recent material. You can contact them at npnd@cs.com to get on either their e-mail or fax list. You can receive a copy of their Friday Fax each week.

Be sure to check our web site www.vhl.org and the VHL Family Forum to keep abreast of issues that concern all of us.

Remember we not only have the right but the responsibility to keep ourselves informed and to let our elected officials know how we feel about our health issues. Please contact the VHL Family Alliance whenever you learn of issues affecting our VHL family so we can keep everyone else informed. Call the 800 Line, e-mail us at info@vhl.org or send us informational material. The who is me and the when is now!