See what this selection of Friends are doing..
Friend of Rare Disease Day
Fondation sur les leucodystrophies
Description of the activity:
Nous allons souligner cette journée avec l'aide de quelques restaurateurs qui aideront financièrement la Fondation, on en parlera dans les médias.
Promotion with restaurants and medias.
Contact person:
Mme Marjolaine Verville
Website:
www.leucofondation.com
Description of organiser:
Other Patient Organisation
Country:
Friend of Rare Disease Day
Mark Krueger & Associates, Inc.
Description of the activity:
MK&A will celebrate Rare Disease Day with a reception highlighting the tremendous work rare disease patient advocates do every day. We have invited a patient advocate to speak about the importance of patients and researchers working together to benefit the global rare disease community.
Contact person:
Cathy Ferrone
Website:
www.kruegerandassociates.com
Description of organiser:
Industry
Country:
Friend of Rare Disease Day
Vasculitis Foundation Cleveland-Akron OH Chapter
Description of the activity:
We will do as much as we can to raise awareness for all the vasculitides, which are rare and underdiagnosed.
Contact person:
Lynn Corwin
Website:
clevelandohiovasculitisfoundationchapter.memberlodge.org/
Description of organiser:
Other Patient Organisation
Country:
Friend of Rare Disease Day
Ehlers Danlos Syndrome Support group
Description of the activity:
We are trying to gather as many case studies as possible to help raise awareness of our rare genetic condition that effects so many more people than first thought.
Contact person:
Lara Bloom
Website:
www.ehlers-danlos.org
Description of organiser:
Other Patient Organisation
Country:
Friend of Rare Disease Day
The Histiocytosis Research Trust
Description of the activity:
Support
Contact person:
Shelley Ross
Website:
www.hrtrust.org
Description of organiser:
Select a role that best describes you
Country:
Friend of Rare Disease Day
Tuberöse Sklerose Deutschland e.V.
Description of the activity:
We will inform together with representatives of the alliance for chronic rare diseases in Germany with information desks about rare diseases.
Contact person:
Sandra Hoffmann
Website:
www.tsdev.org
Description of organiser:
Other Patient Organisation
Country:
Friend of Rare Disease Day
Associação Portuguesa de Osteogénese Imperfeita
Description of the activity:
I´ll send the information to all my contacts, I´ll brying an announcement on my T-shirt on that day. I try every day that each day is a little rare disease day.
Contact person:
Céu Barreiros
Website:
www.freewebs.com\aposteogeneseimperfeita
Description of organiser:
Other Patient Organisation
Country:
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