Company
RASopathies Network

Location of Event
World Cafe Live 3025 Walnut Street Philadelphia, PA

Relevant Website
https://www.milliondollarbikeride.org/

Date of Event
02/28/2014

Name of Event
World Cafe Live Happy Hour for the Million Dollar Bike Ride

Event Details
(Philadelphia, PA) Friday, February 28th, World Café Live(3025 Walnut Street) Happy Hour from 5pm-7pm. Enjoy drink specials and munchies to kick off the celebration of the Million Dollar Bike Ride for Rare Disease Research. For more information contact laversa@upenn.edu or visit www.milliondollarbikeride.org. Open to the public.

Is Event Open to the Public?
Yes

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Location of Event
Penn Wynne Elementary School, Wynnewood PA 19096

Rare Disease | Genetic Condition
All Rare Diseases

Date of Event
02/28/2014

Name of Event
Wear that You Care

Event Details
For the second year in a row, students and faculty at Penn Wynne Elementary School will be wearing blue and/or denim in support of those in our community affected by or living with a rare disease.

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Company
RASopathes Network

Location of Event
Williamstown Middle School 561 Clayton Road Williamstown, NJ 08094

Relevant Website
https://www.monroetwp.k12.nj.us/middleschool/

Date of Event
02/25/2014

Name of Event
What Makes Your Genes Rare?

Event Details
2/25/2014 (Williamstown, NJ) Williamstown Middle School will be wearing jeans, talking about what makes their genes rare, and collecting money for rare disease research. Private event.

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Company
Farmers Insurance

Location of Event
4680 Parkway Dr #100, Mason OH 450401623701_10152159576845219_91483463_n-2

Rare Disease | Genetic Condition
Nager Syndrome

Date of Event
02/28/2014

Name of Event
Blue Jeans for Rare Disease Day

Event Details
February 28th is Rare Disease Day, and here at the District Office, we are having a “Blue Jeans” day to help support this charity. If you donate $5, you may wear jeans on February 28th in our office. If you would like to donate or participate, please let me know!

We choose this charity because of Khristi’s beautiful 2 years old cousin, Lauren. She was born with Nager Syndrome. There have been fewer than 200 documented cases of Nager Syndrome worldwide. Again, if you would like to participate, please contact me with any questions! Thanks for your time!

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Company
Bryan’s Wish

Location of Event
Facebook and work
R

elevant Website
https://childrenfoundation/fundraiser/bryan-wish/

Rare Disease | Genetic Condition
Bronchiolitis Obliterans

Date of Event
02/28/2014

Name of Event
Bryan’s Wish

Event Details
On February 28th I am encouraging all my friends,family and co workers to support Wear That you Care day and sport your best pair of jeans and will be accepting any donations. I will be donating all proceeds to the global genes Project.

Anticipated Number of Attendees
30

Is Event Open to the Public?
Yes

_____

Company
Oregon Health & Science University, Rare Disease Research Consortium

Location of EventScreen-Shot-2014-02-21-at-9.29.18-PM1
Portland, OR

Relevant Website
https://www.ohsu.edu/xd/about/news_events/news/2012/02-27-ohsu-scientists-at-lead.cfm

Rare Disease | Genetic Condition
90 rare diseases

Date of Event
09/25/2014

Name of Event
OHSU Rare Disease Research Consortium Annual Event

Event Details
We are planning an event to showcase OHSU’s strengths in rare disease research that will provide a platform to explore new external and internal collaboration opportunities to potentiate the search for new therapeutics. Our rare disease research spans the entire translational pipeline, and with over 160 faculty & staff and a portfolio of 90 rare diseases expertise areas, OHSU has one of the largest formally organized rare disease consortiums in the U.S.

We plan to follow the same general format as our last conference, which was attended by over 200 faculty and staff. There will be a poster session, a set of short talks showcasing outstanding OHSU programs in rare disease research, and keynote talks. Our last conference featured keynote lectures by Dr. Bill Gahl, director of the NIH undiagnosed rare disease program at NIH, and David Frohnmayer (former Oregon Attorney general, past president of Univ of Oregon, rare disease patient advocate). Similar to the last rare disease conference (see https://www.ohsu.edu/xd/about/news_events/news/2012/02-27-ohsu-scientists-at-lead.cfm), invited speakers will present lectures and participate in small working groups in addition to conference keynotes.

Leadership of the OHSU Rare Disease Research Consortium will attend National Rare Disease Day at NIH, so the 2014 OHSU annual rare disease event will be held in 2014 on a date to be determined.

Anticipated Number of Attendees
200

_________

Location of Eventimage
Kermit WV

Rare Disease | Genetic Condition
Posterial polymorphous corneal dystrophy

Date of Event
02/28/2014

Name of Event
Rare disease Day 5K

Event Details
I am hosting a 5k in honor of my daughter who has PPMD. She was diagnosed at the age of 1. There is not alot of information of her condition. Especially on children. All proceeds are going to the children’s hospital of Pittsburgh for research.

Anticipated Number of Attendees
50

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