Treatments and cures for diseases are developed through research and clinical trials. If you want to help advance the work being done, participate in a quality treatment trial.
Help improve the diagnosis of CJD Learn more.
Help improve the diagnosis of CJD Learn more
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Get Involved
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By becoming an advocate for people with Creutzfeldt-Jakob disease and their caregivers, you can directly improve the care of your loved one. Believe in yourself as a caregiver, protect your health, ask for help, and speak up for your rights. Reading the pages on this website is the first step to getting informed and gaining confidence. As your confidence grows and you learn to recognize your strengths and weaknesses as a caregiver, you will improve at asking for help from family, the workplace, friends and others. In turn, these skills will improve your caregiving.
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Activists are people with CJD or other prion diseases, caregivers, friends and families who come together to enable change and a future without prion disease. CJD activists call for advancements in federal research funding, growth in state-supported services, support for caregivers and improvements in the quality of care for people with prion disease. Specific changes have been made by caregivers asking for family medical leave, funding caregiver respite breaks, Medicare and Medicaid coverage, medical education programs and support for research.
- Follow the legislation that Congress is working on at thomas.loc.gov, Caregiving PolicyDigest, GovTrack.us or Official California Legislative Information.
- Write your Senators and Representatives to tell your story and ask for changes. You can start with a sample letter from the CJD Voice site.
- Join the Volunteers in Public Policy at the National Organization for Rare Disorders (NORD).