"Improving Health Care Experiences in the Rare Disease Community with Information and Support"
Rare New England is pleased to announce partnership for this conference with 
University of Vermont Children's Hospital.


When: September 23, 2017
Where: Sullivan Classroom, University of Vermont
Time: 8:30 AM - 4:00 PM
$20pp, children 12 and under $5.00
Registration through Eventbrite 

AGENDA

8:30 to 9:00 Registration and Continental Breakfast

9:00 to 9:15Welcome

9:15 to 10:00 “Genetic and Genomic Testing 101”, Ben Solomon, MD, FACMG, Managing Director, GeneDx 

10:00 to 10:30 “Navigating the School System to Get What you Need”, Leah Burke, MD, Director, The University of Vermont Medical Center, Clinical Genetics Program

10:30 to 10:45 Break

10:45 to 11:30 “Managing a Complex Disease in a Complex Health Care System”, Mark Korson, MD, Genetic Metabolic Center for Education, Rare New England BOD“

11:30 to 12:15 "Promoting Better Life Quality with Helpful Resources", Panel, Angel Flights, Vermont Therapy Dogs, Muscular Dystrophy Association (MDA) 

12:15 to 1:15 Lunch 

1:15 to 2:00 “How to Navigate the Insurance World When You Have a Rare Disease”, Betty Morse Health Services Training & Technical Assistance Specialist Children with Special Health Needs (CSHN) Vermont Department of Health

2:00 to 2:45 "Vermont Family Network: Family-to-Family Support, Information and Connections”, Joanne Wechsler and Connie Simendinger, Vermont Family Network

2:45 to 3:00  Break

3:00 to 3:30  Patient storyAllison Wood, Rare New England Volunteer

3:30 to 4:00 “Patient- and Family-Centered Care: Improving Care through Mutually Beneficial Partnerships”, Amy Cohen, PhD, BCBA, CLSSGB, PMP Patient- and Family-Centered Care Program Manager
The University of Vermont Medical Cente
 UVM and RNE are organizing a conference targeted for patients and families to obtain information about services and resources available to the rare disease community. We believe information empowers all stakeholders, leading them toward improved life quality for patients and families.  
We have a great agenda planned and is included below.
Registration is mandatory and first-come, first-served through Eventbrite. Continental breakfast and lunch is included.
There will be a child watch with fall activities.
Read on for more details!
There will be a child watch with children's activities close by. Volunteers will supervise and lead projects. However, children's needs will be responsibility of caregivers.
University of Vermont 
Sullivan Classroom
89 Beaumont Avenue
Burlington, VT 01803

"Navigating the School System to Get What you Need", Leah Burke, MD, University of Vermont Children's Hospital
Working with the schools on establishing IEPs, 504 plans, and individual therapies can be overwhelming for families. We will talk about handy resources as well as ways to advocate for your child and educate their teachers and schools about your child’s condition.

"Managing a complex disease in a complex health care system", Mark Korson, MD, Rare New England Board of Director
- Rare diseases are often complex and multi-systemic. Physicians and health professionals are not well trained around these conditions which puts pressure on the patient or parents to have to educate and advocate on behalf of themselves or their child. This can lead to high stress situations, especially in the inpatient setting. This talk reviews the nature of complex rare diseases and the challenges patients and families face, and introduces practical suggestions to reduce the opportunities for stress and help make care a smoother process

"How to Navigate the Insurance World When You Have a Rare Disease"Betty Morse, Technical Assistance Specialist, Vermont Department of Health, Children with Special Health Needs
- In a perfect situation navigating your health insurance coverage would be easy. However, the reality is, health insurance is a complex topic for most people. And more so, if you have a rare disease.
Have you ever asked yourself these questions?
How do I know if my insurance plan will fit my needs? 
My prescription has been denied, what can I do?
What do they mean it isn’t medically necessary? 
How do I talk with my insurance company? 
What do I do next? 
Where can I get assistance?
Traveling in your insurance world when you, or a loved one has a rare disease can seem frustrating and confusing. This presentation is geared to give you some strategies to develop a better understanding of your insurance needs, and be better prepared to navigate your insurance world with confidence.

"Genetic and Genomic Testing 101", Ben Solomon, MD, Managing Director, GeneDx
The genetic and genomic testing landscape is changing very quickly. It can be dizzying to try to keep up with new developments and understand what they mean for patients and families, as well as clinicians in the field. This talk will discuss the past, present, and future of genetic and genomic testing, focusing on how this area of medicine relates to rare diseases.

"Patient Story" - Allison Wood
Glutaric Acidemia type 1 is a rare genetic disorder. Babies with GA-1 cannot break down protein properly. This can cause harmful substances to build up in their blood and urine, affecting their health, growth, and learning. Without treatment, almost all children affected with GA-1 will suffer what’s called a metabolic stroke within their first two years of life. Allison has a family member with a diagnosis of GA-!.
Allison is a Member of the Rare New England Volunteer Team . She is also a member of the Organic Acidemia Association and a consumer task force member for Baby’s First Test.

Patient- and Family-Centered Care: Improving Care through Mutually Beneficial Partnerships", Amy Cohen, PhD, BCBA, CLSSGB, PMP
Patient- and Family-Centered Care Program Manager
The University of Vermont Medical Center
Patient- and Family-Centered Care is a unique approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among patients, families, and healthcare providers. This presentation will review the 4 core principles of patient- and family-centered care, specifically: dignity and respect, information sharing, participation and collaboration. We will discuss how patient- and family-centered care leads to improved outcomes for patients, family members, and communities, highlighting the various ways that individuals can get involved and how patient and family engagement can shape the future of health care in our area

"Vermont Family Network: Family-to-Family Support, Information and Connections"Joanne Wechsler and Connie Simendinger, Vermont Family Network, Vermont Family Network (VFN) Family Support staff are skilled, caring families of children with special needs who have “walked the walk and talked the talk.” Learn how we can provide support and empowerment as you navigate the complexities of special education and healthcare systems. VFN has many ways that we can help you become your child’s most effective advocate as a partner with the professionals who serve your family.

"Promoting Better Life Quality with Helpful Resources",, Angel Flights, Vermont Therapy Dogs, Muscular DystrophyAssociation
e will hearaboutvaluable resources for patients and families living with rareand complex disorders.



We are pleased to announce that scholarships to attend this conference are now available! Please call 802-847-4557 or email info@rarenewengland.org to apply.