Massachusetts Rare Action Network

CNBC launches CNBC Cures to help 30 million Americans with rare diseases CNBC Cures aims to raise awareness of rare diseases. Led by "Squawk Box" anchor Becky Quick, CNBC Cures was inspired by her family's own rare disease journey.

Mark your calendars for the first-ever state-recognized CVI Awareness Day on September 9!

Register now to join the CVI community – including leading advocates, researchers, and educators in the field – at the Massachusetts State House for a panel discussion featuring insightful discussions and important stories that will make some noise and build awareness for CVI.

And don’t miss the CVI Art Exhibit! From September 8 through 12, you’re invited to explore a one-of-a-kind art exhibit, featuring work from the unique perspectives of artists with CVI, including some Perkins students. The display will be in the fourth floor exhibit hall outside the House Gallery at the Massachusetts State House.

CVI Awareness Day is hosted by Representative Steve Owens of Watertown, Mass. and the CVI Center at Perkins School for the Blind.

Learn more – and register to join us – at Perkins.org/CVIAwarenessDay.

CVI Awareness Day at the Massachusetts State House Join the CVI community, including leading advocates, researchers, and educators in the field, for the first-ever CVI Awareness Day in Massachusetts!

Happy 4th of July to all!

Registration is OPEN!!!
Learn more and register now: nordsummit.org

🚨 Registration is officially OPEN for the 2025 NORD Rare Diseases and Orphan Products Breakthrough Summit on October 19–21, 2025 in Washington, D.C. 🌐

From Voices to Breakthroughs, this is the must-attend event for the rare disease community — bringing together patient advocates, researchers, policymakers, and industry leaders to advance innovation in care, research, and policy.

Learn more and register now: nordsummit.org

Their children have a rare condition. They didn’t know its name – until now. Five families with children who have the newly discovered rare condition, ReNU syndrome, recently gathered in a D.C. park. Scientists believe 100,000 more people have it.

Check out this awesome new resource put out by NORD on all things health insurance!!

The NORD® Claim Your Care expanded program — your one-stop resource for everything health insurance — has launched! Learn more: ClaimYourCare.org

From navigating the various health insurance options to filing appeals, NORD Claim Your Care was created to help empower our Member organizations and the public to better advocate for patients, reduce barriers to care, and provide direct support to those in need. Explore this new resource today!

NORD CEO Statement on the Termination of the Advisory Committee on Heritable Disorders in Newborns and Children - National Organization for Rare Disorders The sudden termination of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) raises serious concerns for the rare disease community and families nationwide.

Also if you are free tomorrow, The Boston Globe is putting on a Rare Disease Day event as well! There is both an inperson and virtual option. The virtual option is FREE: https://rarediseasesummit2025.splashthat.com/

Here is more information below:
The Boston Globe Rare Disease Summit

Tuesday, Feb. 25, 10 a.m. to 3 p.m. ET (hybrid virtual and in-person)

Tomorrow is The Boston Globe Rare Disease Summit, a hybrid in-person and virtual event that includes a fireside chat with NORD CEO Pamela K. Gavin. Virtual registration is free

For those in Boston hoping to attend in person, NORD is offering 50% off in-person registration when you use offer code “NordSocial" at checkout.

Rare Disease Summit 2025 SAVE THE DATE!

Hi Everyone!! Happy Monday before Rare Disease Day!!! Hope to see many of you on Saturday. As a reminder here is more information about the event and dont hesitate to reach out with any questions! Wear your stripes!

Event announcement!! Come join the MA Rare Action Network on 3/1 to celebrate Rare Disease Day 2025 at the Boston Public Library!! Details are attached in the flyer! We are hoping to have this be a space for community members to come together, meet each other, and hopefully have a little fun! If you have any questions feel free to email me at [email protected]

Do you have any plans for Rare disease day this year? Comment below what you are planning to do or events you may be interested in!

Did you know Rare disease day is not only in the United States? Learn more about Rare disease day across the world at this link! https://www.rarediseaseday.org/