Sometimes just knowing where to start your search can seem overwhelming. But it need not be. Start with a list of the agencies and institutions you are already a part of or know about — from the department of motor vehicles and utility companies in your area to your hospital and workplace, your grocery store and gym.
Now think about the services these places offer that could help ease your CF care burdens. For example, utility companies often reduce rates for medical needs; gyms offer discounts to members with disabilities; and workplaces provide free employee counseling.
Next, tap into any available public service resources. Whether it’s Social Security Disability, Supplemental Security Income, Medicare, Medicaid or other forms of financial and medical support, these services are there to help. Call your local Social Security Administration office. And don’t forget to explore your state, county and city health department websites for similar support.
As you work, keep a list of contacts — people in the CF community who know its many resources — close at hand. You may already know role models at your hospital or have favorite online experts, and you’ll no doubt find others in your research. In the meantime, here are a few to add to your list:
Now that you’re off to such a strong start, you’re ready to branch out:
- Speak up. One of the easiest, and most effective, ways to find existing resources is by word of mouth. Simply mention what you’re looking for in casual conversations. You never know what your friends, colleagues and other contacts can refer you to.
- Get online. CF websites like this one, as well as hundreds of others, provide access to the latest information on everything from treatment options to clinical trials. If you do not have Internet access, call the CF Foundation (800-FIGHT-CF) for printed information.
- Connect with community. Remember, you’re not alone. Reach out to CF peers virtually for moral and educational support. You can also learn about the latest medications and devices by meeting with CF pharmaceutical and medical equipment sales representatives. The CF Foundation has a wealth of resources to help you.
- Think outside the CF box. Expand your search to other community health organizations, such as those for diabetes, transplant and lung health. They feature ideas and resources you may not find in the CF community. Check out non-profit organizations that specialize in chronic illness or disability needs, too.
- Become a groupie. You may be surprised to find out what general community groups — fraternal organizations, such as Rotary, Lions and Elks, or churches can offer to help you. So ask around.
- Voice your concerns. Don’t forget your local, regional or national elected officials. They are there to hear your concerns. Find out who your representatives are and reach out to them by phone, mail or even in person. The CF Foundation has an advocacy toolkit you can use to speak out and take action on behalf of people with CF.
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