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2019 Agenda

The Living Rare, Living Stronger agenda includes sessions in which patients and families can gain insights and practical tools for living their best lives with rare diseases, with tracks provided for newly diagnosed patients, long-term patients, caregivers and physicians/medical students. The Forum offers four tracks, enabling attendees to customize their experience. Choose one track to follow throughout the Forum or build your day based on sessions of interest.

Friday, June 21, 2019

6:00 pm

Family BBQ

We're kicking off the weekend with fun! Join us for a family BBQ, Texas style.

Saturday, June 22, 2019

8:30 am

Plenary Breakfast

Stories of Hope when Doctors and Patients Collaborate

9:30 am

Workshop 1

Living Rare: Newly Diagnosed/Beginner Track

Diagnosing Rare: Terminology, Tests and “The Numbers”

Living Stronger: Advanced Patient & Caregiver Track

Drug Development 101: What, Where, Why and How to Get Involved

Loving Rare: Caregiver Education & Coping Track

Relationships: Managing Marriage, Raising a Rare Child, Caring for the Other Children

Caring for Rare: Medical Professionals and Medical Student Education

Genetics & Genetic Testing: Overview for HCP’s

10:00 am

Coffee & Networking Break

11:00 am

Workshop 2

Living Rare: Newly Diagnosed/ Beginner Track

Clinical Trials and Investigational Therapies: Navigating your Options

Living Stronger: Advanced Patient & Caregiver Track

Finding Services for the Patient, i.e. FMLA, Medicaid, Short term Disability, Copay/Medical Services, 211 Texas Hotline and more!

Loving Rare: Caregiver Education & Coping Track

School Advocacy: Education Plans and Advocacy

Caring for Rare: Medical Professionals and Medical Student Education

Case Studies in Diagnosing Medical Mysteries

12:00 pm

Workshop 3

Living Rare: Newly Diagnosed/ Beginner Track

Genetic Testing: Is it for Me?

Living Stronger: Advanced Patient & Caregiver Track

Depression: Evaluation, Diagnosis and the Role of Therapy and Psychiatry

Loving Rare: Caregiver Education & Coping Track

Transitioning Care: Q&A with Parents and Top Specialists from the Area

Caring for Rare: Medical Professionals and Medical Student Education

Caring for your Patient with a Rare Disease: An Overview for HCPs and Students

1:00 pm

Networking Lunch

2:00 pm

Workshop 4

Living Rare: Newly Diagnosed/ Beginner Track

Ending Isolation: Tips for Connecting and Resources for Support

Living Stronger: Advanced Patient & Caregiver Track

Long-term Survivor Panel: Tips, Tricks and Life Hacks for Living Your Best, Rare Life!

Loving Rare: Caregiver Education & Coping Track

Stress Management: Self-Care and Emotional Health for the Caregiver

Caring for Rare: Medical Professionals and Medical Student Education

Current Trends and Opportunities in Rare Disease Research

6:30 pm

Rare Impact Awards

In what promises to be an unforgettable evening, NORD's annual awards ceremony will be held on June 22 at Space Center Houston, a Smithsonian Affiliate and the Official Visitor Center of NASA Johnson Space Center -- the home of astronaut training and NASA Mission Control.

The awards ceremony brings the entire rare disease community together to celebrate those who are making extraordinary contributions to the lives of rare disease patients and caregivers.

Black tie encouraged.

Sunday, June 23, 2019

8:30 am

Living Rare, Living Stronger Bon Voyage Brunch

What's on the Horizon for Rare Disease: Gene Therapy, Editing and More