We Speak Up So That Rare Doesn't Mean Forgotten
At The Hope Project for Kids advocacy isn't a side mission- it's a lifeline. We are fighting for the rights, recognition, and resources that children with rare diseases and their families deserve.
What We Fight For
Expanded Newborn Screening & Genetic Testing Access
Early detection saves lives. We’re advocating for universal newborn screening so that no child is left undiagnosed.
Access to Care, Medicaid Services & Family-Centered Policy
Families deserve equitable access to specialists, therapies, and support; we work for policies that make this possible.
Inclusive Education &
Rare-Aware Schools
Children with rare conditions deserve dignity, accommodation, and understanding in schools. We build toolkits, push for teacher training, and policy reform.
Elevating Family Voices in Public Policy
Parents and caregivers are experts too. We ensure they’re heard in hospital boards, statehouses, and legislative sessions.
National Awareness & Narrative Change
Every diagnosis deserves visibility. We use media, events, and partnerships to shift how rare disease is understood by the public.
Step Up for Kids With Rare Diseases
The Hope Advocacy Ladder gives you practical ways to turn compassion into action — at your own pace, in your own way.
Step 1: Light the Spark (Quick Actions- 1 to 5 minutes)
Even the smallest spark can ignite hope. These quick actions are perfect for busy families, first-time advocates, or anyone ready to get involved right away.
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Sign Up for Advocacy Alerts: Stay in the loop with urgent calls to action. Get 1–2 text or email alerts per month.
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Send a Quick Message: Use our pre-written templates to email lawmakers in under a minute. Your voice helps move policy forward.
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Share on Social: Post a ready-to-use graphic or story to spread awareness.
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Step 2: Share Your Light (Storytelling & Awareness- 15 to 60 minutes)
Your story has the power to light the way for others. By sharing your experience, you help lawmakers, communities, and schools understand what families face every day.
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Submit Your Family Story: With your permission, we use your story in briefings, testimony, and awareness campaigns.
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Write a Letter to the Editor: Use our templates to tell your community why rare disease advocacy matters.
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Host a Mini Awareness Event: Gather friends, schools, or community groups. We’ll provide flyers, talking points, and Bravery Badge stickers.
Step 3: Build the Flame (Community Champions- 1 to 3 hours)
When sparks come together, the flame grows brighter. These actions are for advocates ready to deepen their impact and bring rare disease voices to the decision-making table.
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Meet With Your Legislators: We’ll guide you through requesting a meeting, what to say, and how to follow up.
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Testify at Hearings: Share your story in public testimony. We’ll coach you and support you every step of the way.
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Lead an Advocacy Day or Rally: Join our national advocacy day in DC or host a local rally. We’ll provide banners, training, and logistics support.
Step 4: Carry the Torch (Long-Term Leaders- Ongoing Commitment)
True change comes when the flame is carried forward. Advocacy leaders sustain the movement, mentor others, and help shape the policies of tomorrow.
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Become a Hope Advocacy Ambassador: Get trained to mentor advocates, organize events, and represent us in coalitions.
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Serve on a Policy Workgroup: Join our team to draft position statements, analyze bills, and guide advocacy strategy.
Our Advocacy in Action
Hope in Action: Where We’ve Been Advocating”
Advocacy isn’t new to us — it’s in our DNA. From state capitols to national coalitions, we’ve been showing up, speaking out, and fighting for kids with rare diseases. Explore some of our recent efforts below.
Business
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Sports
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Culture
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Lifestyle
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Resources for Advocates
Tools to Help You Shine
Advocacy isn’t new to us — it’s in our DNA. From state capitols to national coalitions, we’ve been showing up, speaking out, and fighting for kids with rare diseases. Explore some of our recent efforts below.
Connect With Our Advocacy Team
Have questions, ideas, or want to get involved in our policy work? Our team is here to listen and connect. Reach out anytime- we’d love to hear from you.
The Hope Project for Kids is a nonpartisan 501(c)(3).
We advocate for policies that improve the lives of children and families affected by rare diseases. We do not support or oppose political candidates.