SmithSolve

20 years ago today, SmithSolve began with a bold goal: to elevate voices across the community.

A lot has changed since then. We’ve grown our team, expanded our capabilities, and deepened our impact. But what’s mattered most from the start are the relationships.

We’re grateful for the patients, families, advocates, clients, and colleagues who have shaped who we are. Their perspectives continue to guide us.

Recently, clients shared what sets SmithSolve apart:

🔹 “SmithSolve is distinct. You understand and uphold the integrity of our relationships with community partners.”
🔹 “We trust your counsel. Our business is in safe and capable hands.”
🔹 “You’re credible because you’re involved. You show up at industry and community forums.”
🔹 “The work you put in makes a difference in the lives of these families.”

We’re proud of the progress we’ve made together – and even more energized for what’s ahead. 🎉

📹 Watch a short video of our team and partners reflecting on the journey at SmithSolve.com.

“I live inside the systems I’m working to change.”

Our team recently heard from Lilly Grossman, founder and CEO of Beyond The Box Advocacy, who was kind enough to share her insights and experience working in disability policy and advocacy.

"When barriers are invisible, they are interpreted as personal shortcomings. When barriers are identified and documented, they become design flaws,” Lilly offered to explain her work challenging systems that limit people with disabilities from fully succeeding, connecting the dots between policy research and direct advocacy.

These challenges are all too common for people with disabilities, rare disease, and other devastating conditions – which is why we’re working every day to challenge conventional approaches when it comes to connecting patient communities, advocacy groups, industry, policy- and decision-makers, and other stakeholders.

2026 marks SmithSolve’s 20th anniversary, and is the perfect opportunity to recognize the lasting relationships we’ve built with clients, partners, and friends across dozens of patient communities.

Together, we’re shaping and continuing to champion the movement. We’re continuing to advance treatment breakthroughs and educational campaigns. And we’re fighting for policy and access wins.

Most importantly, we’re working to fulfill our ultimate mission and measure of success: improving the lives of patients and their families.

Learn more about our work, our commitment to patients and communities, and the insights and experience of our first 20 years at SmithSolve.com.

Rare disease is entering a moment of real possibility – thanks to alignment in scientific breakthroughs, technology, and patient advocacy – with the potential for meaningful impact… but only if we meet this moment with urgency and certainty.

CNBC hosted its inaugural Summit earlier in March, and followed it up with last week’s documentary. The deeply personal stories shared by families living with rare diseases give added urgency to the insights from the Summit:

🔹𝗥𝗮𝗿𝗲 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗶𝘀 𝗵𝗶𝗱𝗶𝗻𝗴 𝗶𝗻 𝗽𝗹𝗮𝗶𝗻 𝘀𝗶𝗴𝗵𝘁. Nearly 1 in 10 Americans is affected – but patients, caregivers, family, and community members still spend years searching for diagnoses and access to care.
🔹𝗥𝗲𝗴𝘂𝗹𝗮𝘁𝗼𝗿𝘆 𝘂𝗻𝗰𝗲𝗿𝘁𝗮𝗶𝗻𝘁𝘆 𝗺𝗮𝘆 𝗷𝗲𝗼𝗽𝗮𝗿𝗱𝗶𝘇𝗲 𝗽𝗿𝗼𝗴𝗿𝗲𝘀𝘀. Innovation can’t thrive when standards feel inconsistent and pathways unclear, especially for therapies where time matters most.
🔹𝗦𝗰𝗶𝗲𝗻𝗰𝗲 𝗶𝘀 𝗺𝗲𝗲𝘁𝗶𝗻𝗴 𝘁𝗵𝗲 𝗺𝗼𝗺𝗲𝗻𝘁. Medical and technological breakthroughs are turning theoretical ideas into viable treatments and scalable platforms.
🔹𝗔𝗰𝗰𝗲𝘀𝘀 𝗮𝗻𝗱 𝗲𝗰𝗼𝗻𝗼𝗺𝗶𝗰𝘀 𝗮𝗿𝗲 𝗶𝗻𝘀𝗲𝗽𝗮𝗿𝗮𝗯𝗹𝗲 𝗳𝗿𝗼𝗺 𝗶𝗻𝗻𝗼𝘃𝗮𝘁𝗶𝗼𝗻. Breakthroughs only matter if they reach patients. Patient engagement, research funding, insurance design, reimbursement, and global reach aren’t side issues – they are the system in which innovation and access take place.
🔹𝗔𝗜 𝗰𝗮𝗻 𝗹𝗲𝘃𝗲𝗹 𝘁𝗵𝗲 𝗽𝗹𝗮𝘆𝗶𝗻𝗴 𝗳𝗶𝗲𝗹𝗱. From helping patients navigate complex health information to supporting research, discovery, and development, AI has real potential when paired with the right data and guardrails. As in every business, industry, and sector, AI has the potential to be transformative – but only if harnessed and applied properly.
🔹𝗔𝗱𝘃𝗼𝗰𝗮𝗰𝘆 𝗰𝗵𝗮𝗻𝗴𝗲𝘀 𝗼𝘂𝘁𝗰𝗼𝗺𝗲𝘀. Again and again, patients, caregivers, parents, and advocates show they aren’t just raising awareness – they’re helping discover drugs, funding trials, and moving the system forward when others can’t, won’t, or aren’t properly incentivized to.

We’re on the cusp of extraordinary progress in the rare disease space – but only if we keep on pushing for scientific and technological innovation, regulatory certainty, capital investment, and the involvement of community and advocacy leadership.

Thanks so much to CNBC and Becky Quick for pushing this conversation and movement forward.

How CNBC Cures is bringing rare disease stories to a national audience

We’re so grateful to have been joined last week – ahead of – by Marissa Penrod, founder and CEO of Team Joseph, to share her and her family’s powerful story. Marissa and Team Joseph’s work – advancing research, empowering patients, and supporting families navigating the challenges of caring for a child with Duchenne muscular dystrophy (DMD) – is true advocacy in action, and an inspiration to us all.

Thank you, Marissa, for your invaluable insights, for your dedication to and advocacy leadership, and for sharing with us a deeper understanding of the experience of caregiving for someone with a .

Drug development is a critical source of hope for the rare disease community, but it's not enough on its own. We need to advocate for continued access, clear regulatory pathways, and ongoing research and innovation – at every level and in every space – which is why we commend the hundreds of advocates on Capitol Hill for with EveryLife Foundation for Rare Diseases this week.

At the state level, we’re working with policymakers like NJ Assemblywoman Assemblywoman Aura Dunn – who stopped by the SmithSolve office last week to commemorate – to strengthen policies that support the rare community, because progress happens when awareness is met with action.

Last week, ahead of , we asked the SmithSolve team for their reflections on our 20 years of work with the rare disease community. Here are just a few of their responses, reminding us all why this work is so important.

We’re excited to attend the 22nd annual this week. Katie, Lisa, and Alex will be in San Diego supporting our clients in the space, and meeting with partners and advocates in the community.

If you’re attending – come find us! We’re looking forward to an energizing week ahead.

Will you be at the 2nd annual West this week? We’d love to connect!

Our EVP Katie Burns will be around to chat about our latest work in and . We thrive on these opportunities to step outside our daily routine and dialogue with like-minded professionals and advocates. There’s no better way to spark creativity, deepen connections, promote collaboration, and find new/better ways to make progress for patient communities.

See you there!