Introducing: Rareatives, a patient-led rare disease publication. Hi, I'm Jessica! 👋 I'm a former writer for Patient Worthy, a 3x rare patient, and the new leader of Rareatives - a place where you can share your Rare Narratives. And I want to meet YOU! #RareDisease

NOW ATTENDING: Patients as Partners: The Next Frontier of Foundations for Rare Drug Breakthroughs #WODC #WODCUSA

"Rare diseases are not partisan" - Kathryn Poe, @EveryLifeOrg #RareDisease #StateAdvocacyDay

"For those with rare diseases and chronic illnesses, delays [in care] are not neutral" - Jasmin Gil, Bleeding Disorders Foundation of North Carolina #RareDisease #StateAdvocacyDay @RareAdvocates

Excited to join @RareAdvocates today in Raleigh, NC for North Carolina Rare Disease State Advocacy Day. Today, we're discussing legislation which could affect the #RareDisease community, asks for our legislators tomorrow, & the best way to share your story. #StateAdvocacyDay

Rareatives will be joining #RareDisease advocates on May 18-19 in Raleigh, NC for NC RDLA Advocacy Day 2026. We look forward to speaking with our representatives about policies and legislation that can support the rare disease community.

Not everyone understands rare or chronic illnesses. That's why Sammy is sharing her story of #DissociativeIdentityDisorder and pseudopseudohypoparathyroidism: to bring awareness to her lived experience while reducing stigma. Read more: rareatives.com/2026/04/07/mu…

When Bennett was diagnosed with #SpinalMuscularAtrophy during the pandemic, his parents didn't know what the future might bring. Today, his parents are grateful for all the lessons their brave and charismatic son has taught them. Read more: rareatives.com/2026/04/07/no…

Part of the #RareDisease community? Love basketball? Join the Rareatives March Madness bracket challenge - winner gets some fun Rareatives swag! play.ncaa.com/share/mbcg/gro…

The Life's a Polyp Foundation celebrates its grand launch for #ColorectalCancer Awareness Month. Founded by FAP and short bowel syndrome advocate Jenny Jones, the Foundation pushes for improved screening, treatment, and support. Read more: rareatives.com/2026/03/09/li…

It's almost #RareDiseaseDay & I wanted to share a story that resonated with me from Faye, who spoke about her daughter's experience with maple syrup urine disease. Faye is currently fundraising to get her daughter #SpeechTherapy. Can you help? Read more: rareatives.com/2026/02/26/ra…

I recently spoke with Volv Global about #RareDiseaseDay & how awareness, at its core, is an act of love. And I truly believe that. The rare disease community so often goes unheard. But amplifying their goals, stories, needs is crucial! Read more: volv.global/rare-disease-day…

Military service taught Dan Shockley to adapt, improvise, & overcome. But nothing prepared him for routine testing that revealed 100 colorectal polyps...or a rare genetic mutation. Now, he's educating medical professionals. Read more: rareatives.com/2026/02/03/af… #AFAP #RareDisease

Join the World Orphan Drug Congress USA 2026! Connect with leaders, regulators, & patient advocates to advance rare disease therapies, clinical trials, & patient access strategies from June 9–11 in Boston: terrapinn.com/WODC/US/2026/R… Use code RAREATIVES for 20% off tickets. #WODC

In the world of rare diseases there's nothing more powerful than a mother's love. The Zebra & The Bear captures seven years of Amber's life as she fundraises for multiple sulfatase deficiency research while trying to save her daughter's life. Read more: rareatives.com/2025/12/19/th…

Paul Romness of @OSTherapies spoke with Rareatives to discuss next-gen treatment advances in #osteosarcoma and why he believes we’re finally at point to genuinely change outcomes for this rare cancer. Read more: rareatives.com/2025/12/04/os…

It took 10 years for Sirlyn's daughter to receive a diagnosis: MSMDS, an ultra-rare disease with under 100 known cases worldwide. Many times, doctors dismissed Sirlyn as "just a mom." But she kept advocating. Read more: rareatives.com/2025/11/14/ms… #MSMDS #RareDisease

What happens when you've seen the benefits of an investigational therapy for your child's rare disease - but the FDA won't approve it? These two mothers are mobilizing to encourage the FDA to speak with patient families. Read more: rareatives.com/2025/11/03/tw… #PDCD #RareDisease