RareNewEngland (@RareNewEngland) header
RareNewEngland (@RareNewEngland) profile picture

RareNewEngland

@RareNewEngland

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
rarenewengland.org
Joined July 2009
  • Tweets4.2K
  • Following465
  • Followers661
1.8KMedia
Photo by RareNewEngland (@RareNewEngland)Photo by RareNewEngland (@RareNewEngland)Photo by RareNewEngland (@RareNewEngland)Photo by RareNewEngland (@RareNewEngland)Photo by RareNewEngland (@RareNewEngland)Photo by RareNewEngland (@RareNewEngland)Photo by RareNewEngland (@RareNewEngland)Photo by RareNewEngland (@RareNewEngland)Photo by RareNewEngland (@RareNewEngland)Photo by RareNewEngland (@RareNewEngland)
"The team identified new diagnoses for 10 patients" #raredisease ow.ly/xwLw50ZZ39K
AI helped diagnose 18 children whose rare diseases had stumped doctors

AI helped diagnose 18 children whose rare diseases had stumped doctors

Researchers from Boston Children’s Hospital identified 18 diagnoses for children with rare diseases using OpenAI’s o3 model.

nbcnews.com
1
20
Interesting article on rare disease innovation #raredisease ow.ly/yGFI50ZZ38C
Rare disease programs are pushing innovation faster than ever | Drug Discovery News

Rare disease programs are pushing innovation faster than ever | Drug Discovery News

When science, manufacturing, and regulatory alignment move together, breakthroughs reach patients faster than ever before.

drugdiscoverynews.com
10
"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 ow.ly/8Tvi50ZZ35t
What I wish healthcare workers knew about racial bias and rare disease

What I wish healthcare workers knew about racial bias and rare disease

As a Black woman living with Huntington's disease, columnist Tanita Allen addresses subtle forms of racial bias that occur in healthcare.

huntingtonsdiseasenews.com
1
1
14
Don't forget our patient adult support group meets on the 1st Tuesday of every month! #raredisease rarenewengland.org/rare-conn…
Image from RareNewEngland (@RareNewEngland)
12
"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 ow.ly/FO9r50ZZ2Xg
FDA ‘reset’ continues with new plan for reviewing rare disease drugs

FDA ‘reset’ continues with new plan for reviewing rare disease drugs

A revamped regulatory framework may give investors less of a “guessing game” as they weigh chances for drug approvals, one analyst said.

biopharmadive.com
1
15
#raredisease
Image from RareNewEngland (@RareNewEngland)
14
#raredisease
Image from RareNewEngland (@RareNewEngland)
1
3
Great news from Illumina to improve our understanding of complex genetic variation #raredisease prnewswire.com/news-releases…
Illumina releases SpliceAI2 to help advance rare disease research

Illumina releases SpliceAI2 to help advance rare disease research

/PRNewswire/ -- Illumina, Inc. (NASDAQ: ILMN) today introduced SpliceAI2, a new genomic AI model designed to address one of the central challenges in genomics:...

prnewswire.com
188
"rare diseases require a degree of attention many health systems are not equipped to provide." #raredisease ow.ly/Ps1B50ZXo6p
Rare Disease Summit held at outpatient center, osteopathic college

Rare Disease Summit held at outpatient center, osteopathic college

With an impressive list of speakers and many students attending from the Oklahoma State University College of Osteopathic Medicine at the Cherokee Nation, CN Health Services hosted its Rare Disease

cherokeephoenix.org
1
15
"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 ow.ly/alLT50ZXo20
IV Couture: Turning medical waste into rare disease advocacy

IV Couture: Turning medical waste into rare disease advocacy

Columnist G Shellye Horowitz's fashion piece, IV Couture, which was made from medical waste, is a 2026 RARE Artist finalist.

hemophilianewstoday.com
1
2
22
Interesting article on the DREAMS project focusing on treatments for rare neuromuscular diseases #raredisease cordis.europa.eu/article/id/…
Speeding up hope for rare neuromuscular diseases

Speeding up hope for rare neuromuscular diseases

The EU-backed DREAMS project is hosting a webinar to explore current AI applications for tackling different challenges in rare...

cordis.europa.eu
1
23
Great article on The Rare Journey Series #raredisease ow.ly/9KsA50ZXo0c
Stories about rare disease that educate and inspire deserve to be told

Stories about rare disease that educate and inspire deserve to be told

Columnist Richard E. Poulin III introduces a new "Rare Journey Series" story, a book that aims to educate young readers about rare disease.

aadcnews.com
15
#raredisease
Image from RareNewEngland (@RareNewEngland)
1
14
#raredisease
Image from RareNewEngland (@RareNewEngland)
7
🦓 MEET ONE OF OUR RARE EXPLORATION EXPERIENCE EXHIBITORS: TARA O'CONNOR! 📅 Saturday, October 17, 2026 ⏰ 10:00 AM – 3:00 PM 📍 Elks Lodge | 887 S. Main Street, Attleboro, MA 👉 Learn more and register: ow.ly/3cGH50ZWWSy
Image from RareNewEngland (@RareNewEngland)
1
25
🦓 MEET ONE OF OUR RARE EXPLORATION EXPERIENCE EXHIBITORS: PAMELA BOVE MPH(C)! 📅 Saturday, October 17, 2026 ⏰ 10:00 AM – 3:00 PM 📍 Elks Lodge | 887 S. Main Street, Attleboro, MA 👉 Learn more and register: ow.ly/3cGH50ZWWSy
Image from RareNewEngland (@RareNewEngland)
1
69
🦓 MEET ONE OF OUR RARE EXPLORATION EXPERIENCE EXHIBITORS: DR. SARAH HOLBROOK! 📅 Saturday, October 17, 2026 ⏰ 10:00 AM – 3:00 PM 📍 Elks Lodge | 887 S. Main Street, Attleboro, MA 👉 Learn more and register: ow.ly/3cGH50ZWWSy
Image from RareNewEngland (@RareNewEngland)
26
MEET ONE OF OUR SPEAKERS & RARE EXPLORATION EXPERIENCE PARTICIPANT: DR. JENNIFER J. BROWN! 📅 Saturday, October 17, 2026 📍 Elks Lodge | 887 S. Main Street, Attleboro, MA Conference: 10 AM – 3 PM Speaker Presentation: 1:15 – 1:45 PM Register today at ow.ly/JJNp50ZPTOW
Image from RareNewEngland (@RareNewEngland)
1
29
🦓 MEET ONE OF OUR RARE EXPLORATION EXPERIENCE EXHIBITORS: RO WATKINSON! 📅 Saturday, October 17, 2026 ⏰ 10:00 AM – 3:00 PM 📍 Elks Lodge | 887 S. Main Street, Attleboro, MA 👉 Learn more and register: ow.ly/3cGH50ZWWSy
Image from RareNewEngland (@RareNewEngland)
2
36
🦓 MEET ONE OF OUR RARE EXPLORATION EXPERIENCE EXHIBITORS: ICING SMILES! 📅 Saturday, October 17, 2026 ⏰ 10:00 AM – 3:00 PM 📍 Elks Lodge | 887 S. Main Street, Attleboro, MA 👉 Learn more and register: ow.ly/3cGH50ZWWSy
Image from RareNewEngland (@RareNewEngland)
18
Load more