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Australian Pompe's Association
Австралия
Добавлен 1 янв 2015
Видео
Catherine's journey with Pompe Disease.
Просмотров 942Год назад
An inspirational video on living well with Pompe disease and all of the complexities that comes with a Pompe diagnosis.
What is Pompe Disease?
Просмотров 508Год назад
Understanding Pompe disease. Renee lives with Late onset Pompe Disease and describes what it is and how it affects us. Australian Pompe Association
Pompe Australia Newborn Screening
Просмотров 472 года назад
The Australian Pompe Association welcomes the proposed expansion of newborn screening announced by the Federal Government. The Association proposes that Pompe disease be included in this updated program as a matter of urgency. The Association would like to see Pompe, and other applicable Lysosomal diseases routinely screened for at birth in Australia. Evidence from other jurisdictions indicat...
Newborn Screening Australia- Pompe Disease
Просмотров 3722 года назад
The Australian Pompe Association welcomes the proposed expansion of newborn screening announced by the Federal Government. The Association proposes that Pompe disease be included in this updated program as a matter of urgency. The Association would like to see Pompe, and other applicable Lysosomal diseases routinely screened for at birth in Australia. Evidence from other jurisdictions indicat...
2021 Conference Dr Barry Byrne - Gene Therapy
Просмотров 782 года назад
The 2021 Australia & New Zealand Pompe Conference Dr Barry Byrne- Gene Therapy Presentation with Q & A session
2021 Conference Psycological Support Dr Sue Hawkins
Просмотров 232 года назад
2021 Conference Psycological Support Dr Sue Hawkins
2021 Conference Conclusion for the day
Просмотров 52 года назад
2021 Australia & New Zealand Conference- End of Day.
2021 Conference Patient story - Roly
Просмотров 202 года назад
2021 Australia & New Zealand Pompe Conference Roly's Story.
2021 Conference John Crowley
Просмотров 102 года назад
2021 Australia & New Zealand Pompe Conference John Crowley Address- Amicus Therapeutics.
2021 Conference New Zealand Allyson & Sam
Просмотров 192 года назад
2021 Australia & New Zealand Pompe Conference Allyson Lock, President of the New Zealand Pompe Network. Includes Sam's patient story.
2021 Conference Reggie's Gift Program
Просмотров 72 года назад
2021 Australia & New Zealand Pompe Conference Reggie's Gift. A program for Australians with Children living with Infantile Onset Pompe disease.
2021 Conference -Patient Support Program
Просмотров 322 года назад
The 2021 Australia & New Zealand Pompe Conference Nurse Emily Mamo - Care4Rare patient support program, Includes Q & A session.
2021 Conference Meeting Address Sandeep Sanofi Genzyme
Просмотров 132 года назад
The Australian & New Zealand 2021 Pompe Conference Opening address- Sandeep Sahney Head of JPAC (Japan & Pacific) - Sanofi Genzyme Sandeep leads the Sanofi Genzyme Business in Japan and Pacific markets for the entire portfolio of Rare Diseases, Rare Blood Disorders, Multiple Sclerosis, Oncology and Immunology. Sandeep sits on the Global Operating Committee for Sanofi Genzyme GBU. Sandeep has ov...
2021 Conference Agenda, Welcome & Introductions
Просмотров 82 года назад
2021 Conference Agenda, Welcome & Introductions
Mental Health Grief & Loss Ongoing Support
Просмотров 82 года назад
Mental Health Grief & Loss Ongoing Support
Metal Health Grief & Loss Things will get better
Просмотров 32 года назад
Metal Health Grief & Loss Things will get better
Mental Health Grief & Loss siblings age appropriate
Просмотров 52 года назад
Mental Health Grief & Loss siblings age appropriate
Mental Health Grief & Loss Advice for siblings
Просмотров 112 года назад
Mental Health Grief & Loss Advice for siblings
Mental Health Grief & Loss Relationships
Просмотров 52 года назад
Mental Health Grief & Loss Relationships
Losing a child to Pompe Grief & Loss -Guilt
Просмотров 122 года назад
Losing a child to Pompe Grief & Loss -Guilt
Pompe Disease Coping with Mental Fatigue
Просмотров 82 года назад
Pompe Disease Coping with Mental Fatigue
Pompe Disease- Mental Health Checklist
Просмотров 52 года назад
Pompe Disease- Mental Health Checklist
Pompe Disease- Next Steps to find support
Просмотров 82 года назад
Pompe Disease- Next Steps to find support
Pompe disease-Caring for our carers & partners
Просмотров 42 года назад
Pompe disease-Caring for our carers & partners
Pompe disease-Coping with pain and fatigue.
Просмотров 1272 года назад
Pompe disease-Coping with pain and fatigue.
Thank you for sharing 💕. My 28 year old daughter is just starting her life with Pompe. As a mom I am shattered because I gave it to her. Your video is most encouraging. 💝
Encouraging news .
Thank you..our grand daughter as been diagnosed at ,13 yrs
Thank you for your story. I am 55 and I have yet to be confirmed with LOPD. I recently been told I have a pathogenic homogeneous variant of the GAA disease. I have muscle pain. Yet, waiting on further tests.
تحياتي العيله الجميله اتمنى لك التوفيق والنجاح أنا صديقه جديده في انتظارك احلى لايك 👍
Can i know how about now nate? Still treating?
Thank you so much for sharing your experience with Pompe's Disease. I was previously unaware it existed. Bailyn and Thomas are precious, happy boys with loving, supportive parents.
Thank you, very informative.