Fw: Rare Disease Day Events

[Guest guest]

2012 Rare Disease Day at the National Institutes of Health (RDD@NIH) celebration

which will be held on

Wednesday, February 29, 2012. Below you will find additional details about

RDD@NIH and other RDD-related events scheduled in the Washington Metropolitan

Area for the week of February 27. We hope you will be able to make some of the

other RDD events and

activities.

 

We thank you for your interest, and we look forward to seeing you next week.

 

Best regards,

RDD Staff

 

2nd Annual RDLA Cocktail Reception and Movie Screening

Event Date: February 27, 2012

Event Contact:

patientadvocate@...

Location: The West End Cinema, 2301 M Street NW, Washington, DC

Website:

http://www.bit.ly/FightToLive

Description: Rare Disease Legislative Advocates is featuring the documentary

“Fight to Live†with panel discussion led by Academy Award Winning Director

Barbara Kopple.

Biovista, Inc.

To honor the fifth annual Rare Disease Day,

please join Biovista, Inc. for cocktails and hors d’oeuvres.

Event Date: Tuesday, February 28, 2012

Time: 6:00pm †8:00pm

Location:             Daily Grill Restaurant

1 Bethesda Metro Center

                              Bethesda, land

                              Note: The restaurant

is located directly above the Bethesda metro station.

 

For valet parking ($4.00) pull in front of Hyatt.

Please RSVP to: j.warden@... by February 24

(434) 971â€1141 • http://www.biovista.com

Description: Biovista, a drug discovery company, focuses on systematic drug

repurposing. Through the use of our proprietary analytics technology (COSS) and

a team of domain specialists, we look for

novel connections between drugs, diseases, adverse effects and targets. Biovista

works with OCP/CDER at the FDA to predict drug safety through mechanism of

action correlations, and we collaborate with Pfizer, Novartis and other major

companies to reposition a number of their compounds. We are also starting work

with several patient advocacy groups (PAGs) to find unanticipated drugs that may

help those suffering from rare diseases.

 

Rare Disease Day at NIH (RDD@NIH)

National Institutes of Health Clinical Center

Event Date: February 29, 2012

Location: Bethesda, MD

Website: http://rarediseases.info.nih.gov/RareDiseaseDay.aspx

Description: On February 29, 2012, the National Institutes of Health (NIH) will

celebrate the fifth annual Rare Disease Day with a day-long celebration and

recognition of the various rare diseases research activities supported by the

NIH Office of Rare Diseases

Research, the NIH Clinical Center, other NIH Institutes and Centers, the Food &

Drug Administration’s Office of Orphan Product Development (OOPD), the

National Organization for Rare Disorders (NORD), and the Genetic Alliance. Rare

Disease Day at NIH (RDD@NIH)

will be held in the Clinical Center’s Masur Auditorium (Building 10) from

8:30 am to 5:00 pm. Attendance is free and open to the public.

Read More.

 

 

Celebrating Patient Researcher Collaboration Reception

Rare Disease Day 2012

Event Date: February 29, 2012

Time:  6:30pm to 9pm

Location: Crowne Plaza Hotel, Silver Spring, MD

Description: NORD is hosting a reception for patient representatives from 6:30

to 9 p.m. on Feb. 29.  Those planning to attend should RSVP at the following

online page:

http://app.fluidsurveys.com/surveys/rarediseases/patient-reception-rare-disease-\

day-silver-spring/?TEST_DATA=

Also, NORD has chartered a bus to take patient representatives to the FDA campus

on March 1.  There are only a few seats left on the bus, so anyone wishing to

reserve a seat should write to Ana Vallarino at

amvallarino@....  Questions about the reception or the bus may be

directed to Ana .

 

 

LEAP Sessions

Event Date: February 29, 2012

Event Contact: Liebers – howard@...

Location: The Dunes, 1402 Meridian Place NW, Washington, DC 20010

Website: http://leapsessions.eventbrite.com

Description: Come out and join MarbleRoad for a benefit concert – to benefit

the work of MarbleRoad, a 501c3 non-profit: connecting people who have complex

illnesses with the resources they need to help them improve their lives. Some of

the performers are Nelly

Kate, Linsay Deming, SoftSpot, Caged Animals, Benny, and Jonny Grave & The

Tombstones.

 

 

FDA Rare Disease Patient Advocacy Day

Event Date: March 1, 2012

Location: Silver Spring, MD

Description: In honor of Rare Disease Day 2012, the Food and Drug Administration

(FDA) is planning to host a special day-long event on March 1, 2012, for rare

disease patient advocates. The purpose will be to enhance awareness of FDA’s

roles and responsibilities

in the development of products (drugs, biologics, and devices) for the

diagnosis, prevention, and/or treatment of rare diseases and conditions. This

event will take place at FDA’s White Oaks facility in Silver Spring, MD. The

program will be interactive. There

will be opportunities for questions and discussion, in addition to

presentations by key FDA officials. For those unable to attend the in-person

meeting, there will be a simultaneous webcast.

Learn more.