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Rare Bone Webinar - Shared screen with gallery view
Shannon Mullen
12:50
This meeting is sponsored by Alexion UK Ltd and Ipsen Ltd UK.For further information please contact:Melissa GirlingAlexion LtdMelissa.girling@alexion.com07850 906763Euvian Tan+44 (0) 7584 230 845euvian.tan@ipsen.com
Daniela Pilz
38:35
What was the cause of death in child with chondrodysplasia punctata? Are contractures typical for this type CP?
Faisal Ahmed
54:41
Great talk Helen; nice overview of the complex bone service
Daniela Pilz
54:41
Thank you
Daniela Pilz
54:54
Great presentation
NZOKAST486
55:05
thank you!
Una
57:30
thank you Helen, excellent presentation and left me wondering how advice about CPR/ACPs are planned for these children
jan
01:27:46
fascinating and informative thank you.
Daniela Pilz
01:28:03
Great presentation Melita and nice to see on line.
anya.webber
01:28:11
Are there any strategies to increase the number of specific treatments available for patients with rare bone disorders? For academic research/industry or at a regulatory/policy level?
Una
01:28:20
thank you for a great talk
Mikhail
01:29:02
Thank you very much, dear Melita!
Aparna
01:29:16
really enjoyed both the lectures. Thanks so much
Louise Leven
01:29:46
Is final height the key outcome for patients affected with achondroplasia from their own perspective? What do patient groups say?
Una
01:29:49
really gives hope for the future
Mhairi
01:31:22
thank you, great talks
Gordon Yip
01:32:18
Thank you, that's very informative
dr6567
01:34:46
Thanks so much for today. I'm sorry but I need to leave now
jan
01:36:52
thank you so much. I'm sorry to have to leave.
Louise Leven
01:37:40
Thank you to the organisers and speakers today- great talks and happy Rare Diseases Day.
JennStewart
01:37:40
I am really sorry to have to leave but have another commitment at 2pm.
Gordon Yip
01:55:58
Thank you very much!!