Rare New England's Mission is to bring together New England patients and families touched by rare and complex disorders. We build foundations for support, creat
Attleboro, MA
Joined July 2009
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'Learning that the FDA approved a gene therapy for MPS IIIA brought a rush of emotions' #raredisease
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Don't forget our caregiver adult support group meets on the 2nd Friday of every month! #raredisease
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"Researchers say receiving a diagnosis can take years. Raising awareness, they say, can help families recognize symptoms and seek care sooner."
#raredisease
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"In December 2025, that changed when the U.S. Department of Health and Human Services added MLD to the list of diseases to be included in newborn screening panels."
#raredisease
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Great article about the importance of roundtables with members of the rare disease community #raredisease
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"We connect and build networks of support with other “CMTers,” and we build solidarity when we show up for members of the wider disability community. We rally behind efforts to spread awareness and raise funds for CMT research." #raredisease
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"The team identified new diagnoses for 10 patients" #raredisease
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Interesting article on rare disease innovation #raredisease
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"Rare disease patients often spend years learning our bodies. We know our baseline. We notice when something changes. We know how stress affects us, what medications we take, what other treatments have helped, and what has not."
#raredisease
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Don't forget our patient adult support group meets on the 1st Tuesday of every month! #raredisease
rarenewengland.org/rare-conn…
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"The 'Rare Disease Framework Initiative' will review existing policies, seek input from patients and experts and come up with a 'fit-for-purpose framework' for drug development and regulation" #raredisease
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Great news from Illumina to improve our understanding of complex genetic variation #raredisease
prnewswire.com/news-releases…
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"rare diseases require a degree of attention many health systems are not equipped to provide." #raredisease
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"For me, it is an opportunity to portray feelings that words cannot always capture. Living with a rare disease takes a toll. Even when we have wonderful medications that allow us to live healthier lives, the burden of care is real." #raredisease
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