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CLSA Advocates for Rare Disease Research
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COMMUNITY RESOURCES

Patient and Research Advocacy Organizations

Government Agencies and Resources


CLSA ADVOCACY ON RARE DISEASES:


CONTACT CLSA FOR MORE INFORMATION:

CLSA Sacramento, CA
Manny Heer, Director, Alliance Development & Advocacy
mheer@califesciences.org or (916) 457-3304

CLSA Washington D.C
Danielle Mitchell, Associate, Federal Government Relations & Programs
dmitchell@califesciences.org or (202) 743-7561

Rare Disease Day, celebrated annually on the last day of February, is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge.

CLSA is proud to take part in the worldwide Rare Disease Day on Wednesday, February 28th.  We hope you will join us in helping to raise awareness about rare diseases and those affected by them.  Contact CLSA for more information about the events taking place for Rare Disease Day in Sacramento, CA and Rare Disease Week Washington, DC as well as additional ways to show your support and get involved.


RARE DISEASE FACTS & FIGURES

Click Here for our CLSA Fact Sheet on Rare Diseases.

Why California?

  • An estimated 3.95 million people in California are affected by a rare disease, half are children
  • California has over 300 organizations dedicated to rare disease research and patient support and advocacy
  • California is home to more than 2,500 biomedical companies and research institutions
  • California leads the world in life sciences research and development (Source: California Life Sciences 2018 Industry Report)
  • California is the second state to have a dedicated rare disease legislative caucus in the state capital, Pennsylvania is the first

GET INVOLVED

Rare Disease Events in CA & DC

Sacramento, CA

  • Wednesday, February 28th: California Rare Disease Day
    • 10:00 AM to 2:00 PM
    • California State Capitol, 1315 10th Street, Sacramento, CA 95814
    • Goal:
      • To promote awareness of rare disease issues, ensure patients have a voice in shaping policy, educate legislators and staff about rare disease policy issues, and provide an opportunity for legislature to engage with rare disease community (patients, academia, hospitals, biopharmaceutical industry, government agencies)
    • Ask:
      • Educate legislators about rare disease policy issues and encourage them to join the newly formed Rare Disease Caucus. The bipartisan Rare Disease California Caucus is led by Assemblymember Rob Bonta (D-Oakland) and Assemblymember Brian Maienschein (R-San Diego) to promote awareness of rare disease issues.
      • If you’re a California resident and would like your state representative to join the Rare Disease California Caucus, click here to take action
    • Agenda:
      • The agenda for California Rare Diseases Day can be found HERE

Washington, D.C.

  • Monday, February 26th: RDLA Legislative Conference
    • 9:00 AM to 4:15 PM
    • Ronald Reagan Building, 1300 Pennsylvania Ave NW
    • This event provides an opportunity to learn about key federal legislative issues, meet other advocates, and learn best practices for building effective relationships with Members of Congress and their staff. One-page background papers for each of the key legislative issues discussed at the Legislative Conference and additional information is available HERE
  • Tuesday, February 27th: RDLA Lobby Day
    • All day, Capitol Hill
    • Additional information is available HERE
  • Wednesday, February 28th: Rare Disease Congressional Caucus Briefing: The Rare Disease Lifecycle: Diagnosis to Treatment
    • 12:30 to 1:45 pm EST
    • Russell Senate Office Building, Room 325
    • Additional information is available HERE
  • Wednesday, February 28th: Rare Artist Reception
    • 5:00 PM to 7:00 PM EST
    • Event information is available HERE
  • Thursday, March 1st: Rare Disease Day at the National Institutes of Health
    • 8:30 AM to 4:00 PM EST
    • 9000 Rockville Pike, Bethesda, MD – Building 10, Masur Auditorium
    • This event aims to raise awareness about rare disease, the people they affect and NIH research collaborations to advance new treatments. The event will feature presentations, poster, exhibits, an art show, videos and tours of the NIH Clinical Center.  Admission is free and open to the public, including patients, patient advocates, health care providers, researchers, industry representatives and government employees.  Additional information and registration for the event is available HERE
Participate Remotely

Tweet Chats

Twitter #RareDiseases
National Organization for Rare Disorders (NORD) | @RareDiseases 
National Institutes of Health (NIH) |  @NIH

  • Friday, February 23rd: NIH Tweetchat from 1:00 PM to 2:00 PM EST
    • Featuring 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
  • Wednesday, February 28th: NORD Rare Disease Day Tweetchat from 1:00 PM to 2:00 PM EST
    • On the topic “What To Do If You or Your Child Receive a Rare Disease Diagnosis” with co-hosts Boston Children’s Hospital and The Mighty
    • Information on how to join the conversation HERE
    • Use the hashtag #RDD18Chat to participate

Event Livestreams

  • Monday, February 27th: Watch the livestream of Rare Disease Day at the National Institutes of Health (NIH)
    • The agenda and link to register are available HERE
    • Speakers include representatives from Global Genes, EveryLife Foundation for Rare Diseases and FasterCures as well as leaders from NIH and the Food and Drug Administration (FDA)
    • Use the hashtag #RDDNIH to be part of the conversation
  • Tuesday, February 28th: Watch the livestream of the RDLA Legislative Conference
    • The draft agenda, link to register for the free livestream and legislative issue briefs are available HERE
    • Use the hashtag #RareDC2017 to quote speakers, comment and ask questions

Ask your Member of Congress to join the Congressional Rare Disease Caucus

Ask your State Legislators to join the Rare Disease California Caucus (CAL RARE)