Ask Your Legislators to Join the Caucus (RDCC)

Find out if your congress member is already an RDCC member here. If they are not an RDCC member, learn how to contact to your legislator by clicking the links below. If they are already a member, send a letter to thank them!

If you’re unable to download the template documents, please copy and paste the text below.

“Letter of Consideration” Template

[Your Name]
[Your Address]
[City, State, ZIP Code]
[Email Address]
[Phone Number]

[Date]

The Honorable [Member’s Full Name]
[Member’s Title]
[Office Address]
[City, State, ZIP Code]

Dear Representative/Senator [Member’s Last Name],

I am writing to you today as a constituent and advocate for individuals affected by rare diseases, specifically CADASIL (Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy). As someone who is personally impacted by CADASIL, or who knows someone who is, I am reaching out to ask you to join the Rare Disease Congressional Caucus and help ensure that our voices are heard in Washington.

CADASIL is a rare genetic disorder that causes progressive damage to small and medium blood vessels primarily in the brain, leading to strokes, cognitive decline, and a range of debilitating symptoms. Although CADASIL affects an estimated 5 in 100,000 people worldwide, it remains vastly under-recognized, with limited research funding and no effective treatment options and no cure. The lack of attention this disease receives, compared to more well-known neurodegenerative conditions, such as ALS , MS, Parkinson’s, significantly impacts the quality of life for those living with CADASIL and their families.

By joining the Rare Disease Caucus, you can help advocate for increased funding for research, raise awareness of the unique challenges faced by individuals with rare diseases like CADASIL, and support policies that will drive advancements in diagnostics and treatment. Representation in Congress is critical to improving access to healthcare, fostering scientific innovation, and advocating for funding that could eventually lead to life-changing treatments.

Your involvement in this caucus will send a strong message to the rare disease community that we are not forgotten, and that there is hope for individuals and families affected by CADASIL. It will also provide a platform for meaningful conversations about the need for greater awareness, research funding, and policy support for rare diseases nationwide.

I urge you to consider the impact that joining the Rare Disease Caucus would have on communities like ours and encourage you to take this important step. If you would like to discuss CADASIL further or need more information, I would be happy to connect with you at your convenience. Thank you for your time and consideration, and for your service to our country.

Sincerely,
[Your Name]
[Your Title or Affiliation, if applicable]
[Your Contact Information]

Dear [Legislator's Name],

I would like to sincerely thank you for your involvement in the Rare Disease Congressional Caucus. Your support and commitment to raising awareness for rare diseases and advocating for policies that help patients and their families is deeply appreciated. Your dedication to this cause is making a meaningful difference in the lives of those affected by rare diseases.

Thank you for being a vital part of this important initiative. I look forward to seeing the continued progress and impact of your efforts.

Warm regards,
[Your Name]
[Your Contact Information]