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Patient Liaison Service: My First Month

23rd April 2015

At Work
I have been working for ALD Life for one month now and I am really enjoying the job. Thank you for all your kind wishes, it has been great talking to you all.

I have spent this month defining my job role, researching the many aspects of ALD/AMN, contacting other charities who can, or already do support us. Looking at medical experts in ALD and AMN, gene therapy Geneticists, Dietitians, Psychologists, Endocrinologists, Neurologists, bone marrow transplant (BMT) specialists, in vitro fertilization (IVF), and preimplantation genetic diagnosis (PGD) specialists, benefits and allowances, grants, the list goes on. As you all know these are the things that we as patients and carers are dealing with day to day.

In the coming weeks I would like to contact you all so I can set up a list of all your individual specialists and perhaps update your information. I would like to visit some of you, and you can always call me. I work from home mostly so you can call me there Tel 01273 703519. Or on Mobile 07480931787 or email kathy@aldlife.org. As in ALD Life’s motto, I want to help you to cope, and help you to hope.

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20 hours ago

ALD Life

Emory University is looking for families in Georgia with individuals who were diagnosed through newborn screening with ALD, as part of efforts to include ALD in the Georgia newborn screening panel. Participants would be speaking with Emory University via phone or email at their convenience. If you would like to give your input, please reach out to Dawn Laney with Emory University at dawn.laney@emory.edu or ‪404-778-8518‬. ...

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