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AZ

Swing Fore the Kids

TopGolf Scottsdale
9500 Talking Stick Way
Scottsdale, AZ

February 26, 2018 6:30 pm - 9:30 pm

The Crain Family Foundation is hosting our second annual Swing into Spring Event at Topgolf! Meet and play with celebrity players and coaches, enjoy great food, drinks, and company, AND support an amazing cause!

Our event will be held on Monday, February 26, 2018 at Topgolf Scottsdale. This year we have partnered with The Newkirk Family to help raise awareness about rare diseases.  Visiting The Clinic for Special Children was a “game changer” as far as getting specific treatment and care for their son Charlie.  We, The Crain Family as well as the Newkirk Family, are passionate about helping other families visit The Clinic for Special Children as well as raising awareness about rare disease.

Swing Fore the Kids

TopGolf Scottsdale
9500 Talking Stick Way
Scottsdale, AZ

February 26, 2018 6:30 pm - 9:30 pm

The Crain Family Foundation is hosting our second annual Swing into Spring Event at Topgolf! Meet and play with celebrity players and coaches, enjoy great food, drinks, and company, AND support an amazing cause!

Our event will be held on Monday, February 26, 2018 at Topgolf Scottsdale. This year we have partnered with The Newkirk Family to help raise awareness about rare diseases.  Visiting The Clinic for Special Children was a “game changer” as far as getting specific treatment and care for their son Charlie.  We, The Crain Family as well as the Newkirk Family, are passionate about helping other families visit The Clinic for Special Children as well as raising awareness about rare disease.

CT

Rare Disease Day at Quinnipiac University

Quinnipiac University North Haven Campus
370 Bassett Rd
North Haven, CT

February 27, 2018 12:00 am

Our event will include an opening from our dean as well as the RDD planning committee co-chairs. We then have an ice breaker event planned, followed by a keynote speaker and then a patient panel. We also will be conducting a RDD library composed of books that are rare diseased-themed, and will have a reading from one of the books during our event.

Rare Disease Day at Quinnipiac University

Quinnipiac University North Haven Campus
370 Bassett Rd
North Haven, CT

February 27, 2018 1:00 pm - 4:00 pm

Our event will include an opening from the dean of the medical school as well as the RDD planning committee co-chairs. We then have an ice breaker event planned, followed by a keynote speaker and then a patient panel. We also will be constructing a RDD library composed of books that are rare diseased-themed, and will have a reading from one of the books during our event.

For more information, please contact bjdavitt@qu.edu

DC

Racefor7 A 7 mile run or walk against the 7000 rare diseases

Washington Monument, Washington DC
2 15th St NW
Washington, DC

February 25, 2018 9:45 am - 12:00 pm

#Racefor7 is a 7 mile run for the cause of over 70 million patients with rare diseases in India with a significant public health burden.
The run occurs simultaneously in Bengaluru, Mumbai, and around the Washington Monument on the 25th, last Sunday of Feb.
This run in USA will extend a global chain of ~7000 runners in India.
We are collaborating with George Mason University, Virginia and seeking additional partners, sponsors, and promoters even to extend beyond Washington DC.
We will be exhibiting at the National Institutes of Health rare disease day event #NIHRDD on March 1st like last year.
Event: 7 mile run #Racefor7 #Rarediseaseday
Venue: Washington Monument, DC.
Date/Time: 25th Feb Sunday; 9:45am
Registration: Online registration required (www.racefor7usa.com)
Request: Distribute widely across your organization and friends as appropriate.
All registered runners/walkers will get a hooded zipper like shown in the attached.

Florida

Rare Disease 2018 Celebrating Newborn Screening ALD…

Well Care Building
6805 West Conlonial Drive
Orlando, Florida

February 28, 2018 9:00 am - 1:00 pm

MD

Rare Disease Day at NIH

National Institutes of Health Clinical Center
10 Center Drive
Bethesda, MD

March 01, 2018 8:00 am - 4:00 pm

Rare diseases affect an estimated 25 million people in the United States. On March 1, 2018, the National Institutes of Health (NIH) will host an event to raise awareness about these disorders, the people they affect, and current research collaborations.

Sponsored by NCATS and the NIH Clinical Center, Rare Disease Day at NIH will take place from 8:30 a.m. to 4:00 p.m. in Masur Auditorium on the NIH main campus in Bethesda, Maryland. The event will feature presentations, interactive panel discussions, posters, exhibits and tours of the NIH Clinical Center.

Admission is free and open to the public. In association with Global Genes®, participants are encouraged to wear their favorite pair of jeans. Be sure to follow the event on social media using #RDDNIH.

Prior to the event, on Feb. 23, 2018, NIH will host a Twitter chat on rare diseases from 1:00 to 2:00 p.m. ET. The chat will feature NIH Director Francis S. Collins, M.D., Ph.D., and NCATS Director Christopher P. Austin, M.D., as well as representatives from the rare diseases advocacy community. Join in the conversation via #NIHChat. Learn more at https://ncats.nih.gov/rdd and register at https://events-support.com/events/NIH_Rare_Disease_Day.

Rare Disease Day at NIH

National Institutes of Health Clinical Center
10 Center Drive
Bethesda, MD

March 01, 2018 8:30 am - 4:00 pm

Rare Disease Day at NIH

Rare diseases affect an estimated 25 million people in the United States. On March 1, 2018, the National Institutes of Health (NIH) will host an event to raise awareness about these diseases, the people they affect and current research collaborations.

Sponsored by the National Center for Advancing Translational Sciences and the NIH Clinical Center, Rare Disease Day at NIH will take place from 8:30 a.m. to 4:00 p.m. in Masur Auditorium on the NIH main campus in Bethesda, Maryland. The event will feature presentations, posters, exhibits, and tours of the NIH Clinical Center.

Admission is free and open to the public. In association with Global Genes®, participants are encouraged to wear their favorite pair of jeans. Be sure to follow the event on social media using #RDDNIH and don’t miss our Twitter chat on rare diseases on Feb. 23, 2018 from 1 to 2 p.m. ET with NIH Director Francis S. Collins, M.D.

MI

Rare Disease Day Symposiu

Prince Conference Center
1800 E Beltline Ave SE
Grand Rapids, MI

March 03, 2018 8:30 am - 11:30 am

The goal of the Rare Disease Day symposium at Calvin College is to raise awareness about rare diseases and provide further education and resources for those affected by rare diseases and those interested in advocating for members of the rare disease community. It is our goal to connect members of the West Michigan rare disease community, including families, scientists, medical professionals, and students. The event is free and all are welcome to attend. Please register at: www.calvin.edu/go/rare-disease.

The schedule for the symposium will be as follows:

8:15        View Posters, Visit Resource Tables, Meet Attendees, Light Breakfast

8:45        Welcome – Dr. Baker and Dr. Wilstermann

8:50        Family Story: Usher Syndrome

9:15        Speaker: Dr. Paul Mark (Spectrum Medical Genetics, Bcs1-related Mitopathies)

9:40        Family Story: Complex III Deficiency

10:05     Coffee Break, Visit Posters, Visit Resource Tables

10:25     Speaker: Dr. Jeff MacKeigan (MSU, research)

10:50     Speaker: Dr. Kevin Timpe (Calvin College, advocacy)

11:15     Closing – Dr. Baker and Dr. Wilstermann

MN

Rare Disease Day

Graduate Hotel
615 Washington Ave SE
Minneapolis, MN

February 23, 2018 11:00 am - 2:30 pm

The University of Minnesota’s Center for Orphan Drug Research and Stem Cell Institute will be co-sponsoring this event on Friday, February 23, 2018. Rare Disease Day is an international event supported by a large number of patient advocacy and research organizations. The event is intended for both university and community attendees including those from health care organizations, biomedical companies, patients and families and other interested parties. This year the theme is research, which is reflected in the program title: Gene Therapy for Rare Diseases: Promise and Challenges. In addition to the formal presentations, we will have posters related to rare disease or orphan drug research from investigators and their trainees. Also participating in the event will be 20+ patient advocacy organizations. This year, the moderator of the formal program is Jakub Tolar, MD, PhD who is the newly named Dean of the University of Minnesota Medical School.

NJ

1st Annual Rare Disease Conference

St. Joseph's Children's Hospital
703 Main St.
Paterson, NJ

February 28, 2018 11:30 am - 2:00 pm

Join the worldwide campaign to raise awareness, learn, and recognize the rare disease community. Come hear stories from our patients and parents whose lives have been touched by a rare disease, meet our vendors and learn from our clinical team.

NV

Dine & Rock Paint – ‘ROCKing Rare’

Truffles N Bacon Cafe
8872 South Eastern Ave, Suite 100
Las Vegas, NV

February 28, 2018 4:30 pm - 8:00 pm

This event is a family friend dining and rock painting event to support Rare Disease Awareness Day, but more importantly a rare disease called Alagille Syndrome.  During the event there will be a select menu handpicked by the amazing chef at Truffles N Bacon cafe. With each purchased meal an adult or child will be able to paint their own personalized rock as part of our ‘Rock Kindness for a Cure’ initiative.

In addition, there will be amazing raffle prizes from generous sponsors where 100% of the proceeds raised from these items will be donated to Alagille Syndrome Alliance.

More up to date details about this event will be shared on our Facebook page and Instagram so feel free to follow us!

For any other questions please email us at: rockkindnessforacure@gmail.com

 

 

Quebec

rareDIG Presents: Rare Disease Day 2018

McIntyre Medical Building, McGill University
3655 Promenade Sir-William-Osler
Montreal, Quebec

February 28, 2018 5:00 pm - 10:00 pm

McGill MSS Rare Disease Interest Group (rareDIG) presents our first big event for International Rare Disease Day 2018! Join us on February 28, 2018 at McGill University where we will be hosting a TED-style-like event featuring 5-6 inspiring speakers from the rare disease community. Our diverse speakers have firsthand experience treating rare disease patients, performing research on rare diseases, advocates in the community and/or are patients themselves. There will be great opportunities to network at the reception. This is an awareness event you do not want to miss!!

South Dakota

2nd Annual Great Plains Rare Disease Summit

Sanford Research Center
2301 E. 60th Street North
Sioux Falls, South Dakota

February 23, 2018 - February 24, 2018 All Day

Tennessee

GLOW for Galactosemia

Tyson Park
2351 Kingston Pike
Knoxville, Tennessee

March 04, 2018 4:00 pm - 8:30 pm

We are a race event (fun run for families, 5k/10k) raising awareness and funds for those affected by Galactosemia.

Our website has all the details @ www.glowforgalactosemia.com! We also have Facebook and Instagram pages!