Disease, Disorders, Medical Disciplines

Rare New England Inc

aka RNE   |   ATTLEBORO, MA   |  www.rarenewengland.org

Mission

RNE's mission is to bring together New England patients, families and providers touched by rare and complex disorders. We offer educational opportunities, create awareness of available resources, and build foundations for support to improve patient quality of life.

Ruling year info

2016

Principal Officer

Julie Gortze

Main address

120 N MAIN STREET Suite 202

ATTLEBORO, MA 02703 USA

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EIN

81-1915808

Cause area (NTEE code) info

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

Alliance/Advocacy Organizations (G01)

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

IRS filing requirement

This organization is required to file an IRS Form 990-N.

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Communication

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Annual Conference

“Improving Health Care Experiences in the Rare Disease Community” RNE has been hosting events for rare disease stakeholders in order to provide educational opportunities that empower them to make informed decisions with aim to better meet needs in their or their patient’s care. These events also create an atmosphere for patients and families to meet and find sources for support as they share similar stories about living with a rare disease and obstacles they encounter. Mutual understanding and sharing ideas and resources help lead toward solutions in everyday life while living and working with rare diseases.

Population(s) Served
People with diseases and illnesses
General/Unspecified
Budget
$20,000

Rare New England has developed the concept of an annual speaker series at major New England academic medical centers as part of an RNE Honors Rare Disease Day project. Rare Disease Day occurs each year on February 28. To be respectful and inclusive of individual hospital teaching schedules, these programmed events can occur any day during the weeks leading up to and following February 28. RNE sets up speaking engagements in academic facilities, medical schools and genetic counseling schools around New England. At each event, a geneticist hosts a 60-minute session in which a patient or parent(s) (or both) come to share the “patient experience” with a medical audience. The possible presentation topics include the diagnostic journey, living with the disease, coping strategies, challenges in the healthcare and/or educational systems, what doctors have done right and what they have done wrong… This section typically runs for about 30-35 minutes. The patient presentation is preceded by a brief clinical overview of the disease by the hosting physician to ensure that the audience has a medical foundation about the condition (to fully understand what the patient is talking about). A short Q&A session follows the patient’s presentation. Target audience is medical professionals with hope of better care for patients.

Population(s) Served
General/Unspecified
People with diseases and illnesses
Budget
$16,000

Last year, nearly 36,000 medical students and graduates applied for 32,000 residency positions across the country. It was a record-setting match, with 3 percent more positions available than the year before. Yet in the field of genetics, the surge was decidedly less palpable: Of 55 slots available, only 30 were filled. Some of those were held by international students intending to return to their home countries, further reducing the cohort of U.S.-based genetics specialists. Furthermore, it is estimated that approximately 50 percent of the genetic metabolic clinics in North America are directed by physicians with no formal training in biochemical genetics; they are filling these positions out of circumstance or institutional need. Simply put, this field is facing a severe workforce shortage. With the patient population expanding and no concomitant increase in specialist-trained practitioners occurring, geneticists face a clinical workload that is burdensome and unsustainable. This dire situation must change in order for the millions of U.S. patients affected by rare disease to receive the specialist care they need and deserve. Reversing this trend is possible—but it will require a deliberate and focused effort to increase awareness of genetics as a career choice. Rare New England (RNE) is addressing this critical situation by launching a Genetics Health Professional Recruitment Program. The Genetics Health Professional Recruitment Program, which RNE will pilot in Boston in 2019, has the potential to directly affect how medical students and graduates view the field of genetics as a career choice and the opportunities available to them. This scalable program can have a tangible, national impact on the medical community—and, by extension, on the patient community. The long-term goal of the Genetics Health Professional Recruitment Program is to increase the number of physicians and other health-care professionals who choose genetics as their professional focus. Our short-term goal is to increase intentional physician recruitment efforts in Boston and New England, piloting a scalable model that can be expanded to other geographical areas and other health-care disciplines. In the spring and fall of 2019, RNE plans to host two recruitment programs in Boston. Each program will feature a pair of evening open houses. These events will be promoted in medical schools and hospitals via student affairs and residency training offices. Each evening will feature presentations on clinical genetics, biochemical genetics, and research genetics, with presenters describing “a day in the life of a doctor” and sharing cases that highlight the rewarding nature of a career in genetics. The programs will include patient perspectives, either live or recorded, and will conclude with question and answer sessions; dinner will also be provided. Target audience will begin with medical students and expand across other medical disciplines with goal of bettering quality of lives for patients living with complex and genetic diseases.

Population(s) Served
General/Unspecified
People with diseases and illnesses
Budget
$9,500

The life of a teen or young adult living with a complicated group of symptoms can be challenging. This population has the extra burden of not only deciding what they want to do in the world but also must consider their illnesses around every possible choice. They may not know others affected by complex disorders, nor may they have easy access to helpful resources as they transition from life as a child with a disease to life as a viable, confident and successful adult who happens to have symptoms to manage. This community can be a support to each other during transition and RNE works to help these vibrant young people make connections they need to become who they want to be. RNE strives to organize an annual teen event where teens and young adults living with complex diseases can come together and discuss their concerns as well as just have fun.

Population(s) Served
People with diseases and illnesses
Adolescents (13-19 years)
Budget
$2,000

Rare New England (RNE) produces a talk show focusing on the needs of the rare and complex disease community. “The World of Rare Disease” was launched in the fall of 2018 and follows our Mission to provide educational opportunities and highlight resources encompassing the rare and complex disease community. RNE invites guests who are known expert contributors in our community into the show to share their insight which is then made publicly available to all stakeholders. Recordings and more information can be found on our website. (World of Rare Disease)

Population(s) Served
General/Unspecified
Adults
Budget
$11,500

Where we work

Financials

Rare New England Inc
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Operations

The people, governance practices, and partners that make the organization tick.

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Rare New England Inc

Board of directors
as of 8/24/2020
SOURCE: Self-reported by organization
Board chair

Julie Gortze

Rare New England, INC

Lois Foster, LICSW

Janet Silver, MSF

Mark Korson, MD

Amel Karaa, MD

John Campbell

Allison Wood

Keywords

Advocacy, Education, Rare Disease, Healthcare