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The Living Rare, Living Stronger Forum will be a virtual program this year! NORD’s goal is always for our annual Forum to provide the rare community with networking, education, inspiration, hope and fun. That hasn’t changed for this year’s virtual event.
Due to rescheduling our event, our agenda is subject to change. Please check regularly.

2020 Agenda

For over 37 years, NORD has been committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and patient services. In 2020, the Living Rare, Living Stronger Patient and Family Forum will bring the rare community of patients, families and caregivers together in with physicians, medical students and health professionals to learn, share and connect in a special virtual event.

*** All times below are listed in Eastern Standard Time (EST)

Saturday, July 18, 2020

12:00 pm -
12:50 pm

Opening Plenary:

Stories of Hope When Doctors and Patients Collaborate

12:50 pm -
1:00 pm

Break

1:00 pm -
1:45 pm

Workshop One

Living Rare: Beginners & Newly Diagnosed

Diagnosing Rare: Terminology, Tests and Genetic Testing

Living Stronger: Advanced Patients & Caregivers

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

Caring for Rare: Medical Professionals and Student Education

Gene Therapy for Rare Disease

2:00 pm -
2:45 pm

Networking Sessions

2:45 pm -
3:00 pm

Break

3:00 pm -
3:45 pm

Workshop Two

Living Rare: Beginners & Newly Diagnosed

Drug Development, Clinical Trials and Investigational Therapies: Navigating your Options

Loving Rare: Caregiver Education & Coping

Relationships: Dating, Divorce & Managing Intimate Partner Relationships, including Fertility Issues, Single Parenting

Caring for Rare: Medical Professionals and Student Education

Impact of COVID-19 on Rare Disease Patients

3:45 pm -
4:00 pm

Break

4:00 pm -
4:45 pm

Wellness Workshop for All

Featuring the Dojo Upstate Sound Meditation

5:00 pm -
6:30 pm

Day One After Party:

Saturday Supper: Rare Storytelling Hour

Sunday, July 19, 2020

12:00 pm -
1:00 pm

Voices for Rare Day 2 Kickoff featuring Breathless on Broadway

1:00 pm -
1:45 pm

Day Two Opening: Fight Back Plenary

Join NORD in Fighting for Rare Disease Awareness and Advocacy and for Your Life

1:45 pm -
2:00 pm

Break

2:00 pm -
2:45 pm

Workshop Three

Living Rare: Beginners and Newly Diagnosed

Ending Isolation: Tips for Connecting and Resources for Support

Living Stronger: Advanced Patient & Caregiver

Psychology of Rare: PTSD, Depression, Evaluation, Diagnosis and Therapy

Loving Rare: Caregiver Education & Coping

Transitioning Care: Q&A with Parents and Top Specialists

2:45 pm -
3:00 pm

Break

3:00 pm -
3:45 pm

Workshop 4

Living Stronger: Advanced Patient & Caregiver

Patient Self Advocacy, Accessing Care, Insurance, etc.

Loving Rare: Caregiver Education & Coping

Stress Management: Self Care and Emotional Health for the Caregiver

Caring for Rare: Medical Professionals and Student Education

Trends & Opportunities in Rare Disease Research: What Every Physician Should Know About Research

3:45 pm -
4:30 pm

Forum Wrap Up

Show Your Stripes Zebra Pageant and Raffle Prizes