See what this selection of Friends are doing..
Friend of Rare Disease Day
DEBRA Italia Onlus
Description of the activity:
We will give all our best support at the activities and we’ll organise new events.
Contact person:
Serena Belloni
Website:
http://www.debraitaliaonlus.org
Description of organiser:
EURORDIS member
Country:
Friend of Rare Disease Day
CDG Family Network
Description of the activity:
We will be presenting information to forge collaberation and partnerships with rare disorder patient and parent groups to the medical and science community at The Sanford-Burnham Institute in LaJolla, CA.
February 26, 2010.
Contact person:
Cynthia Wren Gray
Website:
www.cdgs.com
Description of organiser:
Other Patient Organisation
Country:
Friend of Rare Disease Day
Living With Stiff Person Syndrome
Description of the activity:
I have SPS and recently married another with SPS. I will blog about rare disease awareness in "In Spite Of Chronicals," featured in my website.
Contact person:
Debra A. Richardson Crawford
Website:
www.livingwithsps.com
Description of organiser:
Patient
Country:
Friend of Rare Disease Day
Hazelbranch
Description of the activity:
We will be raising awareness through our social media network including Facebook,Twitter and Linked In.
Contact person:
Toby Buckle
Website:
www.hazelbranch.co.uk
Description of organiser:
Other
Country:
Friend of Rare Disease Day
The NOMID Alliance
Description of the activity:
We are planning on an awareness event and fundraiser to benefit our website translation info many languages to increase awareness about Cryopyrin-Associated Periodic Syndromes )CAPS) worldwide.
Contact person:
Karen Durrant
Website:
http://www.nomidalliance.net
Description of organiser:
Other Patient Organisation
Country:
Friend of Rare Disease Day
Swedish Orphan Biovitrum
Description of the activity:
The mission of Swedish Orphan Biovitrum is to develop and make available orphan drugs and niche specialty pharmaceuticals for patients with rare diseases and with high unmet medical needs.
Contact person:
Sylvain Forget
Website:
www.swedishorphan.com
Description of organiser:
Industry
Country:
Friend of Rare Disease Day
Debra Belgium
Description of the activity:
spread the news among our own members and join the Belgian Alliance Radiorg
Contact person:
Ingrid Jageneau
Website:
www.debra-belgium.org
Description of organiser:
EURORDIS member
Country:
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