Congressional Support

Congressman Kennedy
Congressman Kennedy
Congressman McGovern
rare diseases massachussetts
U.S. Senator Elizabeth Warren
U.S. Senator Ed Markey


Massachusetts Biotechnology Council

The Massachusetts Biotechnology Council (MassBio), a not-for-profit organization that represents and provides services and support for the Massachusetts biotechnology industry, is the nation’s oldest biotechnology trade association. Founded in 1985, MassBio is committed to advancing the development of critical new science, technology and medicines that benefit people worldwide.MassBio

Massachusetts Health Council

Massachusetts Health Council is a non-profit, non-partisan statewide organization of more than 150 governmental and voluntary agencies, consumer and advocacy groups, professional societies, and private corporations committed to improving and protecting the health of the residents of the Commonwealth.

massachusetts health council

Upcoming Events

Hear O.U.R. Voice Art Project

World Rare Disease Day 2015

Orphan. Undiagnosed. Rare.


Rare Disease Rhode Island

Past Events

World Rare Disease Day 2014

Hear O.U.R Voice Art Exhibit 2014

Massachusetts State House

World Rare Disease Day Panel Discussion 2014 & Shire Presentation


On April 25, 2013, DNA Day, The Manton Center for Orphan Disease Research held a launch party for the Massachusetts Rare Disease Community at Children’s Hospital in Boston.

U.S. Senator Edward Markey’s Swearing-In Ceremony

On August 8, 2013, Sandi Carter Brown and Patricia Weltin were honored to attend U.S. Senator Markey’s swearing-in ceremony.

Markey, 67, a former U.S. representative, took the oath administered by Boston Mayor Thomas M. Menino during a ceremony attended by hundreds at historic Faneuil Hall in Boston.

Lens on Life

On November 16, 2013, Rick Guidotti from Positive Exposure came to The Manton Center for Orphan Disease Research to take pictures of our rare kids. The Massachusetts Rare Disease Community partnered with The Manton Center for Orphan Disease Research to put together this event. A team from Cambridge Biomarketing put the event together to make it amazing. There was face painting, a photo booth, a music corner, crafts, great food and our friend Rick Guidotti was on hand to take photos!