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The 2020 Living Rare Forum has been tentatively rescheduled for July 18-20. As the coronavirus pandemic evolves, NORD will continue to evaluate our plans for the conference to determine our best course of action for the safety and well-being of our community.
Due to rescheduling our event, a revised agenda will be posted soon. Please check regularly.

2020 Agenda

For over 35 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 StrongerTM NORD® Patient and Family Forum will bring the rare community of patients, families and caregivers together in Cleveland, Ohio with physicians, medical students and health professionals to learn, share and connect in a welcoming and supportive atmosphere.

Saturday, July 18, 2020

6:00 pm -
9:00 pm

Living Rare Family Welcome Reception

5:00 pm - 8:00 pm: Registration Open
6:00 pm - 9:00 pm: Rockin’ Rare Reception

Sunday, July 19, 2020

8:00 am -
8:30 am

Registration and Continental Breakfast

8:30 am -
9:30 am

Plenary Breakfast: Living Rare, Living Stronger Forum Opening

Stories of Hope when Doctors and Patients Collaborate

9:40 am -
11:00 am

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!

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

Gene Therapy for Rare Diseases

11:00 am -
11:30 am

Coffee Break

11:30 am -
12:45 pm

Workshop Two

Living Rare: Beginners & Newly Diagnosed

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

Living Stronger: Advanced Patients & Caregivers

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

Loving Rare: Caregiver Education & Coping

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

Caring for Rare: Medical Professionals and Student Education

Caring for Rare Disease Patients in Your Practice

1:00 pm -
2:00 pm

Networking Lunch and Roundtable Sessions

2:00 pm -
3:15 pm

Workshop Three

Living Stronger: Advanced Patients & Caregivers

Ending Isolation: Tips for Connecting and Resources for Support

Living Stronger Track: Advanced Patient & Caregiver Track

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

Current Trends and Opportunities in Rare Disease Research: What Every Physician Should Know about Research

3:15 pm -
4:00 pm

Fight Back

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

7:00 pm -
11:00 pm

The Rare Impact Awards at the Rock & Roll Hall of Fame

Monday, July 20, 2020

8:30 am -
11:00 am

Living Rare, Living Stronger Bon Voyage Brunch

8:30 am - 9:30 am: Living Rare, Living Stronger Bon Voyage Brunch
9:30 am - 11:00 am: The Power of Story Telling