See what this selection of Friends are doing..
Friend of Rare Disease Day
Foundation for the Advancement of Bone Marrow Transplantation Switzerland
Description of the activity:
I shall visit the event, together with patients of my SOS-patient groups in seven cities
Contact person:
Mrs. Candy Heberlein
Website:
www.knochenmark.ch
Description of organiser:
Health professional
Country:
Friend of Rare Disease Day
Slovak Myeloma Society - Patients Club
Description of the activity:
The aim of is to increase the quality of the patients’ life.
To help the patients not to feel they are alone with their problems.
To work together with family members and their relatives.
Contact person:
Miroslav Hrianka
Website:
www.myelom.sk
Description of organiser:
Other Patient Organisation
Country:
Friend of Rare Disease Day
MM&WM Patient organisation (CKP)
Description of the activity:
promote activities around Rare Disease Day in the Netherlands
Contact person:
Lia van Ginneken
Website:
www.kahler.nl
Description of organiser:
Other Patient Organisation
Country:
Friend of Rare Disease Day
Alpha1 Awareness UK
Description of the activity:
The membership secretary of the charity Alpha1-Awareness-UK has written to our members in Scotland, Wales and Northern-Ireland urging them to attend the Rare-Disease events at their Parliaments or Assemblies as well as contacting their MSPs, AMs and MPs. She herself will attend the Welsh Assembly to support Rare Disease UK and to lobby, in both English and Welsh, for better treatment of patients with Alpha1 Antitrypsin Deficiency.
Contact person:
Alan Heywood-Jones
Website:
www.alpha1awareness.org.uk
Description of organiser:
Other Patient Organisation
Country:
Friend of Rare Disease Day
Orphanet Germany
Description of the activity:
Orphanet Germany is organizing a "Rare Disease Day Symposium" on the 26.th of february. This event will take place at the medical school hanover(MHH).
Contact person:
Kathrin Rommel
Website:
http://www.orpha-net.de
Description of organiser:
Other
Country:
Friend of Rare Disease Day
NOI PER AISMME
Description of the activity:
A concert and a book of poetryes.
'Music and poetryes for Life'.
16+20 feb 2010, Copparo (FE), Italy
Davide Zannoni
Contact person:
DAVIDE ZANNONI
Website:
www.aismme.org
Description of organiser:
Other
Country:
Friend of Rare Disease Day
Rare Disease UK
Description of the activity:
We are coordinating press coverage and events across the UK.
Contact person:
Stephen Nutt
Website:
www.raredisease.org.uk
Description of organiser:
EURORDIS member
Country:
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