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See what you missed in 2020

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