2014 World Rare Disease Day Community Events

The sixth annual World Rare Disease Day will be held on Friday, February 28, 2014.  Many organizations and patient advocates are putting on private and public events to bring awareness in their local communities.

If you would like to participate in one of the events listed, please contact the event organizer.  If you have an event that is not listed on here, please submit the details so we can share it!

Alabama

2/28/2014 – UAB World Rare Disease Day Symposium.  Children’s Harbor at Children’s Hospital of Alabama. Two separate lecture series for rare disease day. The medical lectures will focus on genomic sequencing and counseling. The community lectures will include important information about sequencing and counseling, but the primary focus will be a panel discussion to talk about how to best advocate for our loved ones care.

California

2/26/20014 – (Riverside, CA).  World Rare Disease Day Luncheon.  Eastside Health Clinic. This event is only for the employees of the clinic.  Private.

2/27/2014 – (La Jolla, CA).  Overcoming Challenges in Orphan Drug Development.  Educational Seminar in Orphan Drug Development, followed by Reception and Silent Auction to benefit HIBM Research Group.  Contact emorgan@agility-clinical.com for more details.

2/28/2014 – (La Jolla, CA).  Patient Education Meeting.  Soft Bones is holding its 2nd Patient Education Meeting on February 27 – 28, 2014. Our meeting will begin at 9:00 am at Sanford Burnham. Dr. Joe Millan from Sanford Burnham, Dr. Matthew Drake from the Mayo Clinic and Dr. Mark Nunes a Pediatrician, Medical Geneticist, and DNA Diagnostician will all be speaking at our event. To learn more or to register, please contact jane@softbones.org.  Public event.

2/28/2014 – (San Diego, CA).  5th Annual Sanford-Burnham Rare Disease Day Symposium.  The topic for the 2014 symposium is “ERAD Defects in the Cytoplasm: The NGLY1 Story.” Registration required for live on-site meeting or webcast.  Public.

Florida

2/28/2014 – (Lady Lake, FL).  Wear That You Care Day at Villages Elementary.  Faculty, staff, and administrators are wearing denim ribbons and jeans to raise awareness of Rare Disease Day and build compassion among all educators towards students and family members who deal with special needs children. Private.

2/28/2014 – (Jacksonville, FL).  Rare Disease Day Jacksonville.  Jacksonville Public Library-Downtown Location.  This year’s theme is “Join Together for Better Care.” Informational brochures, research and legislation updates and information regarding support groups will be displayed.  For more details, contact clgistpsalm91@yahoo.com.

Georgia

2/28/2014 – (Peachtree, GA).  Cushing Education Day.  Dinner Friday night.  Meeting March 1st, 9 am to 5 pm.  Public event.  For more details, contact cushpace@gmail.com.  Public.

Illinois

2/25/2014 – (Barrington, IL).  ”Dollar Denim Days” Campaign.  Students and staff will show they CARE about RARE by wearing the Blue Denim Genes Ribbon™ & jeans every day during this week-long campaign & donate a $1 each time they don their denim.  Go to http://www.hope4bridget.com for more details.

2/28/2014 – (Downers Grove, IL).  Pierce Downer Elementary School.  Two families in this school community affected by a rare condition/disease teamed up to encourage the Pierce Downer school to participate in an awareness campaign on February 28th to wear a Global Genes ribbon and their own denim jeans.  Private.

2/28/2014 – (Downers Grove, IL).  Kingsley Elementary School – Kingsley’s Student Council is promoting rare disease day with an awareness campaign and donations to Global Genes by having the students wear their Genes ribbon and jeans on February 28th. Noah and Laine’s class is also making bookmarks to sell ($.50) to help raise funds for the Global Genes Project so that our smaller voice can be a larger one moving forward!  Private.

Kentucky

2/18/2014 – (Ft. Thomas, KY).  Fort Thomas City Council Meeting – Proclamation of Rare Disease Day, February 28th.  For more details, contact gina5620@gmail.com.

Massachusetts

2/28/2014 – (Brockton, MA).  Christ Church.  As a church family we (goal 60 people) will dress in BLUE jeans and show our support to this important cause.  This effects us all and we need to be the voice for the voiceless. Our family will provide the supper and activites for the children.  For more details, contact janiscreedon@gmail.com.  Public.

Michigan

2/26/2014 – (Fraser, MI).  Unique Genes.  Unique Genes, is a kid friendly event being held at the Fraser Activity Center (34935 Hidden Pine Drive, Fraser, MI 48026) on February 26, 2014 from 6pm-8pm. The event will be a pre-pay event and cost $5 per child. Each child will bring a pair of jeans to decorate. For more details, contact cchsangels@gmail.com.

3/1/2014 – (Fraser, MI).  CCHS Fundraiser.  7 pm-11 pm – Vintage House.  Every 3 years the CCHS Network holds a family conference. The next one is this summer in Florida. The monies we raise will go to lessen costs for families (including our own) to attend. We are hoping this will allow more families to attend.  For more details, contact cchsangels@gmail.com.

Nevada

3/07/2014 – (Henderson, NV).  4th annual Little Miss Hannah’s “Jeans for Genes Day” school awareness event.  Elementary school students will receive an age-appropriate education on the genetics of rare disease and show their compassion by creating personalized cards of “hope.”  Private event.

New Jersey

3/03/2014 – New Jersey State House.  Please join Rare New Jersey, for an hour of learning and discussion in honor of Rare Disease Day, a global, annual event that draws attention to rare diseases as an important public health issue that cannot be ignored. 12:00 – 1:00 pm. Committee Room 4 – Annex Building
New Jersey State House, 125 West State Street, Trenton.  For more details, contact LSchill@comcast.net.

New York

2/26/2014 – (Albany, NY).  1:00 pm to 5:00 pm, Hilton Garden Inn.  Albany Medical College and Albany Medical Center will be hosting a rare disease forum geared towards patients, families, caregivers, and medical staff focusing on Pediatric Rare and Complex Diseases.  RSVP required. Public event.

North Dakota

02/28/2014 – (Hankinson, ND). 1st Annual Midwest Rare Disease Day Symposium.  Small Group Education, Networking, Vendor Booths, Silent Auction. For more details, contact DragonflyAdvocacy@gmail.com.  Public event.

Ohio

2/28/2014 – (Chillicothe, OH).  Rare Disease Awareness Rally.  YMCA.  We will be having a bone marrow drive and a blood drive. Our youth will be doing trifold with information highlighting rare disease within our community. We will be selling t-shirts and doing a raffle and all monies raised will be donated to the Cincinnati Children’s Blood and cancer research institute.  For more details, contact jeannie.brown4@yahoo.com.  Public.

Pennsylvania

2/28/2014 – (Pittsburgh, PA).  RARE Meetup for World RARE Disease Day.  Awareness evening for over 7,000+ RARE Diseases/Disorders. Reservations are not necessary. However we would like to have an idea of how many people will be attending, please let Jamie’s Dream Team know you if be attending by Phone 412-377-3898 or info@jamiesdreamteam.org.

South Dakota

2/28/2014 – (Sioux Falls, SD).  The 4th Annual Sanford Rare Disease Symposium is organized by the Coordination of Rare Diseases at Sanford (CoRDS) and Sanford Children’s Health Research Center in honor of Global Rare Disease Day. The goals of the symposium are to educate and raise awareness among the healthcare providers, researchers and the general public. Registration required.  Public.

Texas

3/01/2014 – (Prosper, TX).  Zumbathon® Charity Event for Adults and Kids.  Proceeds will be donated to the Hunter Syndrome Foundation, a non-profit organization with a mission to fund medical research for Hunter Syndrome, a rare and terminal genetic disorder.  For more information, please call 240-375-9629 or admin@huntersyndromefoundation.org.  Public event.

Wisconsin

2/28/2014 – (Southern WI).  Rare Acts of Kindness Wisconsin.  In partnership with Nature Hill Intermediate School, the Wisconsin Bleeding Disorders Network, the Family Advisory Committee at Children’s Hospital of Wisconsin, and the International WAGR Syndrome Association, Snappin’ Ministries Inc will be having volunteers hand out our “Rare Act of Kindness” cards along with free items to promote awareness of rare disorders.  Public.

International

Australia

2/21/2014 – River Torrens Adelaide, South Australia.  Held over two days – Friday 21st and Saturday 22nd February this event is the first for Adelaide supporting ‘One In A Million’ – Australia’s Rare Disease Alliance. The three organisations involved are FARA/Captain Courageous Foundation/The Unicorn Foundation. Start anytime and walk, jog or sprint the 4.2 km official time trial around the picturesque River Torrens in Adelaide’s CBD. Register on the day or via www.gothetorrens.com.au enquiries can be directed to varlli@fara.org.au.

Mexico

2/28/2014 – Construyendo Esperanza (Building HOPE).  Fundación Red Sanfilippo.  8:00 am Hospital ISSSTE Guanajuato / Sanfilippo Sydrome (conference).  5:00 pm Exhibition and sale of paintings by painter Andrés Fernández, a collection of 49 works dedicated to the fight against Sanfilippo syndrome entitled “Amonstrito Corazón.” 6:00 om Rare Diseases Surprise show.  For more details, contact janette@redsanfilippo.org.

Russia

2/14/2014 – ”The Blue Bird” Award for Rare Disease.  Russia, Moscow, Krasnopresninska emb, World Trade Center, Conference Hall, 06:00 PM.  This prime is recognition and awards for: medical care area; support for the people with rare diseases; legislation development; improving diagnostic process for rare diseases at early stages also; enhancement for treatment and aftercare for the patients with rare diseases.

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