Rare and Undiagnosed Network (RUN) Day Without Doctors Hosted by the National Ability Center in Park City!
The National Ability Center has been generous to offer an afternoon of fun for our rare and undiagnosed families here in Utah. The activities will be Cycling, Archery and Equestrian.
Since this is RUN’s first event, it will be small and intimate. It will be an opportunity to connect with other rare families and we wanted to introduce you to the wonderful activities that are available at the National Ability Center!
The National Ability Center would welcome a donation of $20 per family. However, it is not mandatory to attend the event.
Please join us for a day without doctors!
If you are interested in attending, please email firstname.lastname@example.org.
Saturday, September 12, 2015
National Ability Center
1000 Ability Way
Park City, UT 84060
Join this riveting community conversation to hear from families about what it is like to be on an undiagnosed medical odyssey, learn about the Utah Population Database, and preview a teaser of the upcoming documentary film "UNDIAGNOSED."
FREE & Open to the Public!
Utah Rare 2-day Event.
February 27th & 28th, 2015
February 27th 2015-State House Events
NORD is encouraging individuals to plan activities at their state capitol or state house to help raise awareness of rare diseases issues that are relevant at the state level. The purpose of the events are to raise awareness of rare disease issues among state legislators; patient organizations, medical professionals and companies work together to plan and organize these events.
Utah Rare Disease Day State House Event
Friday, February 27, 2015
State Capitol Building-Rotunda
350 North State Street, Salt Lake City, UT 84114
If you would like to register for this event, sign-up here.
Rare Disease Day-Utah State House 2015
Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.
The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Utah. Educating state legislators and their staff members is extremely important and we are thrilled that you have decided to participate!
February 28th 2015: Rare Disease Day Symposium 1:00-5:00pm
University of Utah – Health and Science Education Building
Salt Lake City, Utah
Schedule of events to come.
Sympoisium-Eventbrite Early Registration Now Open. See link below. Space is limited.
When: 8:00 am to 2:00 pm, Saturday, February 7th, 2015
Where: Knobbe Martens (12790 El Camino Real, San Diego, CA 92130)
Fee: $20 online by January 25; $10 for students and post-docs. $40 onsite. Registration fee includes parking, program brochure, breakfast, coffee, and lunch.
Registration Link: https://www.123signup.com/event?id=ysmzj
Forum Title: “Breakthrough Technologies Accelerating diagnosis and Filling the Therapeutic Gap for Rare and Genetic Diseases”
Forum Summary: According to a 2013 Rare Disease Impact Report conducted by Shire, the economic impact of diagnosing and management of rare disease is substantial. One of the key findings the report revealed is that it takes, on average, more than seven years for a rare disease patient in the US to receive an accurate diagnosis. There are 6,000 rare disease recognized by NIH and yet only approximately 200 of these illnesses have effective pharmacologic treatment coverage. There is a gap of medicines and therapies that can address certain unmet medical needs of rare disease patients that has major growth potential for pharma and device companies in the market for orphan disease.
SABPA Medical Device and Diagnostic Forum will bring together stakeholders of in research, academia, regulatory and investment to foster partnerships that will boost the development of medical device, drug, and biological products for rare disease patients. Ultimately improving the diagnosis, treatment and care of patients and their families.
Speakers and Panelists
Keynote Speaker: Research and Drug Development for Rare Diseases: NIH Initiatives and Resources
Rashmi Gopal-Srivastava, Ph.D., Director, Extramural Research Program, Office of Rare Diseases Research (ORDR), NCATS, NIH
Solving the Unsolvable: the Genomics Revolution at Our Fingertips, Ryan Taft, Ph.D., Director Scientific Research, Illumina, Inc.
Key FDA Challenges in Bringing Orphan Drugs to the Market in the United States, Michael Swift, J.D., Senior Director, Compliance & Regulatory, Legal, Illumina, Inc.
Home-based Non-invasive Brain Monitoring for Individuals with Rare Neurological Conditions
Philip Low, Ph.D., Founder, Chairman & CEO, Neurovigil Inc.
Venture Philanthropy: A Novel Approach for Funding Rare Disease Research, John Wetherell, Ph.D., Partner, Pillsbury Winthrop Shaw Pittman
Panel Discussion: New approaches to overcome obstacles and drive discovery and innovation for faster patient impact
Moderator: Christina Waters, Ph.D., CEO & Founder, Rare Science
Christian Braemer, CEO & CO-Founder, Benefunder
Dr. Hudson Freeze, Director, Human Genetics Program, Sanford Children’s Health Research Center
Dr. Philip Low, Founder, Chairman & CEO Neurovigil Inc.
John Walmsley, VP Product Development, Starfish Medical
Kim Goodsell, Patient Advocate
“Life Sciences on the Bay”
3rd Edition of the French BioBeach Fall Regatta
Saturday November 15th 2014, San Diego Bay, from 12:00PM to 3:00PM
Our goal for this 3rd edition of the French BioBeach Fall Regatta, is to initiate our efforts to raise awareness for the undiagnosed children. This year is a special year, as we will race for a cause, and dedicate this race to Alex.
If you can not participate into the race, feel free free to join Alex & the racers for the after race/trophy party that will take place, starting around 4PM at Fiddler’s Green Restaurant on Shelter Island
Caroline Cheung, mother of undiagnosed "Alex" who is part of the documentary Undiagnosed: Medical Refugees, is running an Undiagnosed Family Support Group for the San Diego area. The goal is to bring together families of undiagnosed children to learn, share, and support each other amidst their long journey in search of a diagnosis.
Meet with other parents to learn about resources, gather the "other" siblings together, and enjoy a beautiful summer day at the park and universally accessible playground!
RSVP to SDUFSG@gmail.com and receive a free flashlight!
Gid Zillah – 8:30 pm
Les Rav – 9:00 pm
DJ Versus in the mix all night
Hosted by: Heavy
Entry will be by donation at the door, $15 suggested
Join us for a benefit concert and silent auction on August 16, 2014 from 7pm to 11pm. We have some great local talent performing and some very generous donations for the silent auction.
Special thanks to the donors who have already confirmed contributions:
- Private Karaoke Party from The Karaoke Underground
- Season Pass and Meet & Greet from Inspire Pro
- Web Design Services from Eric Bullet
- Large Framed Photos by Grease Man Photography
- Large Framed Painting by Trent Rickman
- LIVE art by Chris Rogers! The pieces he completes at the event will be auctioned upon completion
- Samadhi Massage Package from Zen Blend
Please contact us if you would like to donate services or items for the silent auction.
Caroline Cheung, mother of undiagnosed "Alex" who is part of the documentary Undiagnosed: Medical Refugees, is putting together an Undiagnosed Family Support Group for the San Diego area. The goal is to bring together families of undiagnosed children to learn, share, and support each other amidst their long journey in search of a diagnosis.
Meet with other parents to learn about resources, gather the "other" siblings together, and enjoy a beautiful summer day at the park!
RSVP to SDUFSG@gmail.com and receive a free kite!
April 25th is Undiagnosed Children's Day!
In raising awareness of the millions of disabled children living without a diagnosis, please help support Undiagnosed, a documentary that captures the arduous journey of patients and their families who are suffering without a diagnosis.
If you live in San Diego or are visiting over April 25th, join the fundraiser celebration!
Friday April 25th, 6 - 9 pm
Jasmine Seafood Restaurant
4609 Convoy St, San Diego, CA 92111
Tickets are $50.00 pp. Please purchase tickets in advance online or make your reservations by April 21st. All revenue will be donated to “Undiagnosed” towards final production of this documentary.
Purchase tickets online @ www.SDULions.org