2024 Rare Disease Day Gathering

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2024 Rare Disease Day Gathering | Registration

The Rare Disease Network, which includes Calvin University, Corewell Health/Helen DeVos Children’s Hospital, MSU College of Human Medicine and Van Andel Institute, will host its 5th annual Rare Disease Day Saturday, February 24, 2024, from 9 a.m. to 4 p.m., at the Prince Conference Center on Calvin University’s campus.

Featured keynote speakers will discuss the advances in genetic testing and treatment over the past few decades that have changed the rare disease landscape. Breakout sessions will provide opportunities to learn more about genetic testing, discover ways to support siblings of children with a rare diagnosis, learn strategies for coping with stress, connect with adults living with a rare diagnosis, and explore rare disease-focused careers.

Please use this form to register for the event.

You can find details about the schedule for the event here.

Submitting this form indicates that you have read and agree to the event waiver.

Name (first and last)

Email address
*

I am a:

Community Member

Educator

Rare Family Member

Health Professional

Rare Disease Advocate

Person with a Rare Disease

Researcher

Student

Other:

Do you represent a non-profit organization involved with rare disease that would be interested in hosting an informational table at this event?

Yes

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(optional) The rare disease(s) with which I have experience:

Please indicate if you have any dietary restrictions for the purposes of planning the lunch menu.

Vegetarian

Vegan

Gluten Free

I don't plan to have lunch at the event

Other:

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Following is a list of breakout sessions that will each be offered twice during the event. What are your top choices (select two)? This will help us schedule sessions in appropriately sized rooms.

Holding Up the Unsung Heroes: A Sibling Support Workshop for Parents and Caregivers

Everything You Want to Know About Genetic Testing

Living as an Adult with Rare

Navigating Insurance and Finances Roundtable Disucssion

What I Wish My Doctors Knew About Working with Patients with a Rare Disease

Career Opportunities in Rare Disease Panel

Would you or someone attending with you benefit from access to a sensory space?

Yes

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If there are other members of your household attending with you, list their names as you wish them to appear on their name tags and indicate ages if any of them are children.

You may also indicate if there are additional dietary restrictions for lunch, if applicable.

Are you planning to stay for the afternoon Rare Disease Research Poster Session?

Please note that if you hope to present at the poster session, you must submit an abstract for your poster here by February 2nd.

No, I won't stay for the afternoon poster session

Yes, I plan to attend the afternoon poster session

Yes, I hope to present at the afternoon poster session

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