Rare Artist

Rare Artist Rare Artists finalists participate in individualized artist-to-advocate coaching to strengthen their advocacy voice.

The Rare Artist Program, powered by the EveryLife Foundation for Rare Diseases, provides a national platform for artists to advocate through visual artwork, music, poetry. The Rare Artist Program was established in 2010 to exhibit the unique gifts of individuals with, or affiliated with, a rare disease to tell their story through art. Now in its 12th year, the Rare Artist Program is focused on pro

viding a national platform for artists to advocate through visual artwork and powerful artist statements. Rare Artist awardees are presented checks and invited to speak during Rare Disease Week on Capitol Hill in Washington, D.C. Their artwork is showcased throughout the year at various patient and biopharmaceutical conferences, displayed at the Rare Hub, social media, and website posts.

03/23/2026

Meet the 2025 Rare Artist Awardees ✨

These remarkable artists were recently featured at Rare Disease Week on Capitol Hill in Washington, DC.

Throughout the week, an Arts + Health panel, Rare Artist gallery, advocacy postcards used in Capitol Hill meetings, and artwork displayed at NIH Rare Disease Day helped bring these stories to life. Awardees also shared their work directly with legislators!

Art is more than expression. Art is advocacy. Art is a powerful way to be seen, heard, and understood.

This week was EveryLife Foundation for Rare Diseases Rare Artist’s 5th annual Paint Night! 🎨 This event brought together...
11/20/2025

This week was EveryLife Foundation for Rare Diseases Rare Artist’s 5th annual Paint Night! 🎨 This event brought together our 2025 Awardees and Judges in one virtual room, united by their shared commitment to advocating for rare diseases through art. Artists who typically work in different mediums explored acrylic painting together, and the creativity, connection, and talent were incredible.

Each year, our Rare Artists paint a zebra. 🦓 Swipe to see a piece by 2025 Awardee Eva Agus. Why the zebra? Share your guesses in the comments.

Thank you to our friends at Paint and Sip LIVE for helping us continue this special tradition!

Rare Artist is honored to celebrate 2025 Rare Artist Awardee DaNice D. Marshall recently featured in Artscope Magazine's...
11/13/2025

Rare Artist is honored to celebrate 2025 Rare Artist Awardee DaNice D. Marshall recently featured in Artscope Magazine's November/December issue.

As the article shares, “Her journey reached another milestone when she was recently named a national Rare Artist Awardee… Through her paintings, she became not only a voice for herself but also a voice for countless others navigating unseen illnesses. Advocacy became inseparable from her creative practice, a commitment to telling stories that invite understanding, empathy and connection.”

Artscope also writes, “Once reserved and hesitant, she now speaks with remarkable clarity and conviction. Advocacy and vulnerability have replaced shyness. Through public talks, panels and exhibitions, she brings attention to issues often left in the shadows… Her art has become both personal expression and social gesture, a call to empathy and action.”

We are proud to see DaNice’s work and advocacy recognized so meaningfully. Read the full feature on Artscope’s website: https://artscopemagazine.com/2025/11/when-silence-became-color/

🎨 Now Announcing the 2025 Rare Artist Awardees! 🌟This year, 3,869 people participated in public voting — over 1,200 more...
10/06/2025

🎨 Now Announcing the 2025 Rare Artist Awardees! 🌟

This year, 3,869 people participated in public voting — over 1,200 more than last year! Out of 235 entries, 20 incredible finalists were selected, and 10 artists were chosen as this year’s awardees. These artists use art, music, and poetry to advocate and share the lived experiences of people impacted by rare diseases.

Awardees are listed alphabetically by title. Learn more here: https://everylifefoundation.org/rare-artist/2025-award-recipients/

🎶 Alive Again — Zanny Nicholas | Complex Regional Pain Syndrome
🎶 Another You — Sophie Seaver | MED13L (Sibling)
🎨 Digested — Beatriz Fraga | Neurosarcoidosis
🎨 Imperfect Pathway — Krista Webb | Usher Syndrome
🎨 In Someone Else’s Shoes — DaNice Marshall | Granulomatosis with Polyangiitis
📝 No Borders for My Voice — Maria Fernanda Llave | Spinal Muscular Atrophy Type 2
🎨 PrismOfLove — Solana Acuna | Severe Combined Immunodeficiency (SCID)
🎨 Soaring Unbroken — Eva Agus | Nasopharyngeal Carcinoma
🎨 Staying Afloat with a Rare Disease — Waiyee Hui | Antisynthetase Syndrome
🎶 Tennessee — Alex Yiu | IRF2BPL Disorder / NEDAMSS

Thank you to everyone who participated — every piece shared a powerful story, and every vote helped raise awareness for the rare disease community.

Want to meet the artists in person? Join EveryLife Foundation for Rare Diseases and at Rare Disease Week on Capitol Hill, February 24–26, 2026, in Washington, DC! Travel reimbursement applications are open through November 7 — apply here: https://everylifefoundation.org/rare-advocates/rare-disease-week/

09/30/2025

🚨 It’s the FINAL day to vote in the 2025 Rare Artist Contest! 🚨

Voting closes tonight at midnight ET (September 30). Don’t miss your chance to help select this year’s Rare Artist Awardees.

🎨 Vote for up to 10 pieces and uplift the voices of rare disease artists at RareArtist.org

09/27/2025

⏰Have you voted? Only 3 days left to vote for your favorite Rare Artist pieces! Voting closes September 30 at midnight ET at RareArtist.org.

Thank you to our sponsors, Ultragenyx, Acadia Pharmaceuticals, Harmony Biosciences and Brett McReynolds, whose support makes this program possible, along with generous support in memory of Ron and Bev Judd.

09/23/2025

🎨 Just 1 week left to cast your votes in the 2025 Rare Artist Contest! Voting closes September 30 at midnight ET.

✨ Fun fact: Over 1,000 votes were cast in the very first day—and we can’t wait to see how many more voices uplift rare disease artists this week.

Vote for up to 10 pieces and help choose our Rare Artist Awardees at RareArtist.org

09/22/2025

It’s time to vote for your favorite 2025 Rare Artist pieces! 🎨✨ Public voting is open September 22–30, 2025.

✅ Each person can vote once for up to 10 pieces
🌍 Every vote helps uplift the voices and stories of rare disease artists

Head to RareArtist.org and click the banner at the top of the page, or use the link in our bio to cast your vote! 🗳️

Let’s celebrate creativity, advocacy, and the rare disease community together. 💜

⏰ The countdown is on! Rare Artist opens for public voting in just 6 hours — at midnight tonight (Monday, September 22nd...
09/21/2025

⏰ The countdown is on! Rare Artist opens for public voting in just 6 hours — at midnight tonight (Monday, September 22nd)!

Visit https://rareartist.org/ and click the banner at the top to vote. Each person may vote once and select up to 10 pieces. The top 10 pieces will be awarded your 2025 Rare Artist Awardees!

Rare Artist is spotlighting 2025 Finalists throughout September leading up to Public Voting, September 22–30 at RareArti...
09/19/2025

Rare Artist is spotlighting 2025 Finalists throughout September leading up to Public Voting, September 22–30 at RareArtist.org. Pieces are presented in no particular order.

#20 Meet W.L. McMurphy, diagnosed with Hypophosphatasia, (YAO) NOD2 Auto-Inflammatory Disease, Pan-disaccharidase Deficiency, Ehlers-Danlos (hEDS), and Mast Cell Disorder. W.L. used watercolor and markers on paper to create the piece, "Kin & Kith".

W.L. says "Neurographic art found me. Like a gift from the universe. The right thing at the right time.

My style is loosely inspired by Neurographica, a formal technique developed by Dr. Pavel Piskarev. My process is more fluid and intuitive. I begin each piece focusing on a word or feeling, then draw bold, intersecting lines. As I soften the edges and add color, calm and clarity often follows.

In 2017, I began experiencing progressive symptoms from multiple rare conditions that affect my mobility, vision, and cognition. I lost my health, independence, and identity that was based on my career, outdoor adventures, and time with loved ones.

Most of my time is still spent navigating treatments and advocating for my care. I also participate in patient databases, PFDD initiatives, and share data to help accelerate rare disease research. I hope to expand my advocacy work, specifically in advancing a data-driven healthcare system and repurposing existing drugs for rare conditions. I believe these areas are the most promising ways to help the most people better manage their rare conditions and have a better quality of life.
I hope my art encourages others to find their own creative outlet."

Rare Artist is spotlighting 2025 Finalists throughout September leading up to Public Voting, September 22–30 at RareArti...
09/19/2025

Rare Artist is spotlighting 2025 Finalists throughout September leading up to Public Voting, September 22–30 at RareArtist.org. Pieces are presented in no particular order.

#19 Meet Mary Porter, diagnosed with Amyotrophic Lateral Sclerosis (ALS). Mary used watercolor on Arches 140 lb paper to create the piece, "Neuronal Death, A Work in Progress".

Mary says, "Being diagnosed with ALS was a devastating event. As a busy physician and lavender farmer I had reached the peak of my career. As my neurons die I watch ALS erode my body and mental resiliency.

I turned to art therapy for help. A novice artist, I began with watercolors. It’s become my shelter through the storm. I’m painting the National Parks that I visit on my bucket list and turning them into an illustrated series of children’s books for my grandchildren. Additionally I’ve been depicting in watercolor what my body feels like in response to the neuronal death going on that’s paralyzing my limbs and diaphragm.

Since diagnosis, I became involved in ALS advocacy which has broadened my world. I’ve met people struggling with ALS and have laughed and cried and grown with them. It’s important to me to showcase my life on social media as a fulfilling life full of hope rather than dying from ALS.

I’m active in the adaptive sports world showcasing to people that one can do more than they thought possible wile dealing with devastating illness. My mission is encouraging people to live their fullest life despite what physical and mental circumstances they navigate."

Rare Artist is spotlighting 2025 Finalists throughout September leading up to Public Voting, September 22–30 at RareArti...
09/19/2025

Rare Artist is spotlighting 2025 Finalists throughout September leading up to Public Voting, September 22–30 at RareArtist.org. Pieces are presented in no particular order.

#18 Meet Elle Becker, diagnosed with Ehlers-Danlos Syndrome, Gastroparesis, Hyperadrenergic Postural Orthostatic Tachycardia Syndrome, Hypophosphatasia, and Mast Cell Activation Syndrome. Elle created the poem, "The Things That Don't Last".

Elle says, "I live with rare diseases, including CIDP, MCAS, and small fiber neuropathy. These conditions have taken much from me—my mobility, my independence, and many relationships. But they haven’t taken my voice. Writing is how I advocate for myself and others in the rare disease community. This poem reflects the internal landscape of living with invisible illness. The daily pain, medical gaslighting, and the sense of being erased while still desperately trying to be seen.

I created this piece during a flare, with trembling hands and brain fog so thick I had to reread every line four times. But that’s what rare disease is—creating meaning and beauty in the midst of chaos. I co-founded a nonprofit organization called The Chronic Haven, where I lead support groups and writing workshops for others like me. My poetry is advocacy—it shows the world what it’s like to live with conditions doctors don’t understand and systems don’t support. My work exists so that no one navigating the rare disease maze feels alone. If I can speak, I will. If I can write, I must. Because in this community, our stories aren’t just art. They’re survival."

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