2021 Agenda

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Friday, June 25, 2021 Saturday, June 26, 2021 Sunday, June 27, 2021 Monday, June 28, 2021

4:00 pm - 5:00 pm

Living Rare Forum Kickoff Concert featuring Red Grammer

Beloved by kids everywhere, Grammy nominated, singer/songwriter Red Grammer has the best children’s music for kids, and parents. Join us to kickoff this years forum with this special interactive concert!

11:30 am - 12:00 pm

Check out our exhibitors!

12:00 pm - 1:00 pm

Opening Plenary: The Patient-Professional Partnership

People living with rare diseases and the clinicians and researchers seeking to help them often develop unique and mutually rewarding partnerships. Three inspiring stories will touch on the close bond between patients and their care professionals.

1:05 pm - 1:55 pm

Breakout 1 (Concurrent)

Coping with Grief and Anticipatory Grief

A rare disease diagnosis can bring feelings of anxiety or pain in response to the anticipation of loss associated with the course of serious illness. People grieve the life they lost, the loss of a child, or anticipating the hardships ahead. This panel of parents and professionals will share their experiences, coping strategies and ways that anticipatory grief can provide opportunities for growth, finding meaning and closure.

Shared Decision-making with Your Care Team

Cultivating a strong and healthy collaboration with care providers is particularly important for people affected by rare diseases. Panelists will discuss their experiences and tips for developing a true collaboration with care providers and medical experts.

Working While Rare

Rare disease patients make important workplace contributions. How do employees with rare diseases get the job done while also managing their health? What challenges do rare disease patients face while working and what resources are available to help them perform their duties? How might employers and co-workers create a supportive environment for employees with rare conditions? Join us to hear from a dynamic panel of rare disease patients in the workforce.

1:55 pm - 2:40 pm

Wellness, Networking and Discussion Groups

Topics include:
• Living Undiagnosed: The Endless Diagnostic Odyssey
• Parents of Newly Diagnosed Rare Pediatric Patients
• Rare Despair and Bereavement
• Rare Men
• Rare Teens
• Rare Young Adults
• Rare Self Care

TelePlay with Project Sunshine for children ages 5-9
Chair Yoga with Erin Marsh
Sound Bowl Meditation with the Dojo Upstate

2:45 pm - 3:30 pm

Breakout 2 (Concurrent)

Getting Involved in Clinical Research: Finding and Preparing for Clinical Trials

Clinical trials offer opportunities for patients to benefit directly from research and contribute to our knowledge of rare diseases. Many patient organizations drive clinical research forward by providing funding and maintaining patient registries. Participants in this session will learn how to find trials and will explore eligibility, expectations and possible outcomes.

Navigating Insurance, Social Security Disability and Patient Assistance Programs

Insurance, disability, patient assistance — oh my! Helping rare disease families access medical care and financial assistance for treatments and day-to-day life is a passion of NORD’s, and we understand that social security and disability can be daunting. Come hear from our panel of experts as they provide basic information on how to navigate assistance systems and share resources for obtaining support.

The ABCs of Advocating for Your Child’s Education

Children and teenagers living with rare diseases face a variety of challenges that sometimes require missing school due to illness or doctors’ appointments. Navigating school in-person can create challenges for kids with physical disabilities, while online school can be difficult for those who learn better and need services that are provided in-person. Learn from other parents about how to advocate for your child’s educational needs, from preschool to college.

3:35 pm - 4:35 pm

Plenary: Building Resilience in a Time of Unknowns

People living with a rare disease build and practice resilience through their long diagnostic journeys, while waiting for new treatments and adaptation to a new normal. During the COVID-19 pandemic, many rare disease patients experienced increased feelings of isolation as they adjusted further to keep themselves and their loved ones safe. Join us to hear inspiring stories of patients who have built rare resilience over the years.

4:35 pm - 4:45 pm

Day 1 Wrap Up

11:30 am - 12:00 pm

Check out our exhibitors!

12:00 pm - 1:00 pm

Plenary: The Rare Sibling Experience

Growing up the sibling of a rare disease patient presents unique challenges, but also opportunities. Join this engaging session where three rare disease siblings will share their experiences, including the joys and obstacles encountered on their families’ journeys and how their love for their sibling has led them to advocacy.

1:05 pm - 1:50 pm

Breakout 3 (Concurrent)

Fighting Back and Fighting Forward Through Advocacy

Joining others in advocacy is one way to fight back against the rare disease affecting you or your loved one and work together for a better future for rare disease patients and their families. This session will explore how to get involved and tips for becoming a rare advocate.

Palliative Care: Debunking the Myths

Palliative care is often misunderstood as only being hospice care. However, end-of-life care is only one part of the palliative care spectrum. Palliative care provides supplemental therapeutic relief of symptoms and side effects and works alongside treatment to help patients with the quality of life. Palliative care is appropriate from day one for anyone living with serious or chronic illness. Join us for this innovative panel as we debunk the myths surrounding palliative care.

Rare in the Family: Navigating the Roles of Patient, Parent and Caregiver

Since many rare diseases are genetic, families often have multiple affected members. Some rare disease patients are diagnosed in adulthood after they have had children. This session will explore the social and psychological needs of rare families.

1:55 pm - 2:40 pm

Wellness, Networking and Discussion Groups

Discussion Groups
  • Getting Involved in Rare Disease Advocacy
  • Getting Involved in Rare Disease Research
  • Parenting Rare Children
  • Rare Disease Caregiver Support
  • Rare Relationships: Dating, Partnership, Marriage and Divorce
  • Siblings of Rare
  • Students for Rare
  • 1:1 appointments with fellow attendees
  • Visit our exhibit hall to connect with our sponsors
  • TelePlay with Project Sunshine for children ages 10-14
  • Chair Yoga
  • Breathing Room: Mindfulness and Compassion Cultivation Practices for Well-Being

2:45 pm - 3:30 pm

Breakout 4 (Concurrent)

Aging with a Rare Condition

New therapies and supportive treatments are helping many rare disease patients live longer. Some rare diseases are life-altering and progressive but not immediately life-threatening. Patients and caregivers joining this session will learn strategies for managing the ever-changing challenges of aging with a rare condition.

Finding Your Community and Building Your Support Network

Following a rare disease diagnosis, many people find strength and solidarity through connecting with others who understand and have shared experiences. Panelists will discuss how they found (or built) a community and developed a support network.

The Intersection of Race, Ethnicity and Equity with Diagnosis and Treatment Access

A substantial amount of research has shown inequity in access to and quality of health care among racial and ethnic minority groups, and disparities can be even greater among individuals who also have disabilities. The journey to diagnosis is already slow and difficult for many rare patients. Panelists will discuss how inequities due to race and ethnicity can make diagnosis and access to quality care even more challenging.

3:35 pm - 4:35 pm

Closing Plenary: Rare Breakthroughs Now and on the Horizon

New innovations are helping to improve the diagnosis, treatment and care of rare disease patients. This session will highlight available technologies that benefit rare disease patients and their families, tools currently in development and possible advances we may be seeing in the future.

4:35 pm - 4:45 pm

Day 2 Wrap Up

7:00 pm

2021 Rare Impact Awards®

For the second year in a row, NORD will present the Rare Impact Awards as an online streaming event. We look forward to celebrating the individuals, groups and companies making extraordinary strides on behalf of the millions of Americans impacted by rare disease.

*All times are EST.
**Agenda is subject to change.
***By attending this event, I am granting the National Organization for Rare Disorders (NORD) permission to use my image(s) and quotes from the program, whether in a screenshot, photo, or as a recording, for purposes including but not limited to enduring archived recording and/or transcript of the event, marketing and/or promotions.

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