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Improving Health Care Experiences in the Rare Disease Community

Rare New England (RNE)

Saturday, November 10, 2018 from 8:00 AM to 5:30 PM (EST)

Improving Health Care Experiences in the Rare Disease C...

Ticket Information

Ticket Type Sales End Price Fee Quantity
General Admission
Registration fee includes continental breakfast, lunch and break snacks, as well as conference materials.
Nov 10, 2018 $30.00 $2.74
Teen Event
In collaboration with Next Step, an organization devoted to building programs "where young survivors feel safe enough to laugh, share experiences, and create a sense of community with peers who truly understand their unique challenges. We empower young people with the tools and knowledge they need to begin asking “what’s next?” instead of “why me?" RNE is offering a day for teens and young adults with rare diseases to come together to meet, share and have some fun. There will be games, music and opportunities to just hang out and chat. Registration fees will cover meals and snacks for the day.
Nov 10, 2018 $30.00 $0.00
Children's Room
A child watch will be available with activities planned, ie. crafts, games, story-telling and more. Registration fees cover meals, snacks and activity materials. If your child would not be requiring a pre-ordered meal, please contact Info@rarenewengland.org for pro-rated registration pricing. *Parents are responsible for their children's basic care and must be accessible at all times. Meals and snack times will align with main conference agenda scheduling.
Nov 10, 2018 $30.00 $0.00
Donations
We welcome any donations to RNE. Donations enable scholarships for attendees who might otherwise not be able to attend our conferences and improve programs that lead to improved quality of lives for rare disease families. YOUR donation could be the only chance a family has for attending an event where they can make connections with other families, meet and talk to specialists and others with resources that better care, and have the opportunity to learn more about managing their diseases. We are a 501(c)(3) nonprofit organization. Please consider donating today!
Nov 10, 2018 Enter donation ($)
Exhibition - Nonprofit
We would love to help spread awareness of your services, however, table exhibition space is very limited and will be honored first come first served upon registration. Each nonprofit registration fee covers meals, materials, and admission to main presentations for 2 representatives
Nov 3, 2018 $200.00 $6.99
For Profit/Industry
We welcome industry to sponsor our conferences. We have a tier schedule starting at $1000. Please contact Julie@rarenewengland.org for more information.
Oct 26, 2018 $500.00 $14.49

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Event Details

 

                         

Rare New England and Cambrooke Therapeutics are partnering to host a conference to provide information to a target audience of patients and families who are living with rare and complex disorders.!

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.

Cambrooke Therapeutics recognizes the critical nature of managing serious medical disorders through medically based nutrition therapies. For people with serious unmet medical nutrition needs, it is a daily challenge to find flavorful, easy options that can sustain their diets and maintain their nutritional needs.

There will be a wide range of speakers covering topics such as a review of diagnostic tools for rare diseases and what to expect from them; the unique aspects of rare disease trials,  various sources of information about trials and the importance of clinical trials; navigating the school system with a rare disease; advocating for your child in the health care setting managing a complex disease in a complex health system, and much more!

We will also host an all day Teen Event separate from the presentation portion! Ages 12 to 23 are welcome to attend. We are honored to be collaborating with Next Steps, who's "mission is to shatter limitations and elevate aspirations of teens and young adults living with life-threatening diseases during their transition to adulthood and into an adult healthcare system". Please see webpage for detailed agenda:

Conference registration fees cover cost of a light breakfast as well as a boxed lunch.

A child watch will be available. There will be games and other activities sure to keep the little ones entertained for the day!

There is a room block at Springhill Suites Marriott, 27 Andrews Parkway Devens, MA 01434
978-772-3030 $112.00/per night. Please make you reference “Rare New England Conference” to get the special rate.

For more information on the event, to review agenda, or for an event flyer please visit http://www.rarenewengland.org/RNE-Conference-2018.html

We thank our great sponsors!

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Have questions about Improving Health Care Experiences in the Rare Disease Community? Contact Rare New England (RNE)

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When & Where


Cambrooke Therapeutics
4 Copeland Drive
Ayer, MA 01432

Saturday, November 10, 2018 from 8:00 AM to 5:30 PM (EST)


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Organizer

Rare New England (RNE)

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, create awareness of available resources, and offer educational opportunities to improve patient quality of life.

RNE offers patient and family support, highlights our region's medical and community resources, connects patients to appropriate national support and advocacy groups, and creates educational opportunities for New England patients and providers to advance care and quality of life for rare disorder patients and their families.


http://www.rarenewengland.org/ 

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