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Haystack Coalition Representative

About the Role

Nevus Outreach Representative to Haystack Coalition

Nevus Outreach Representative to the Haystack Coalition (Volunteer Position)


Position Overview


Nevus Outreach is seeking a dedicated volunteer to serve as our official representative to the Haystack Coalition, a national organization advocating for policies that improve access to treatments for ultra-rare diseases. This role will ensure that the needs of individuals affected by neurocutaneous melanosis (NCM)—an ultra-rare neurological condition sometimes associated with congenital melanocytic nevi (CMN)—are represented in critical discussions on rare disease policy, research, and treatment development.


Commitment & Responsibilities
  • Represent Nevus Outreach at virtual Haystack Coalition meetings throughout 2025 and 2026.

  • Stay informed on federal policy initiatives impacting ultra-rare disease research and treatment access.

  • Advocate for the inclusion of NCM and CMN in discussions on rare disease clinical trial development and drug accessibility.

  • Communicate relevant updates and advocacy opportunities to the Nevus Outreach Board and community.

  • Collaborate with other patient advocacy organizations to drive policies that support treatment advancements for ultra-rare conditions.

  • Provide written quarterly reports or updates on key discussions, legislative efforts, and coalition activities.

Who You Are


The ideal candidate is passionate about rare disease advocacy, knowledgeable about Nevus Outreach’s mission, and comfortable engaging with policymakers, researchers, and industry leaders. Preferred qualifications include:

  • Lived experience as a caregiver to an individual with NCM.

  • Prior service on the Nevus Outreach Board of Directors or previous volunteer experience with Nevus Outreach.

  • Strong communication and advocacy skills.

  • Interest or experience in public policy, healthcare access, or rare disease research.

  • Ability to attend and actively participate in virtual meetings.

Why Serve?
  • Play a key role in advocating for NCM and CMN patients at the national level.

  • Gain valuable experience in legislative advocacy and rare disease policy.

  • Expand your professional network within the rare disease and regulatory community.

  • Help Nevus Outreach strengthen its presence in ultra-rare disease advocacy.

This is a volunteer position requiring an initial six month commitment for 2025, with the potential to continue into 2026 and beyond.

If you are passionate about advocating for those affected by neurocutaneous melanosis (NCM) and congenital melanocytic nevi (CMN), we encourage you to apply!

Time Commitment:

  • Flexible, with an estimated 1-3 hours per month.

Location:

Remote

Hours:

Variable

Type:

Volunteer

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