Pagina di Allie Freitas afreitas@rar moderatore

« I'm the Online Patient Communities Coordinator at NORD. Please contact me for anything regarding the online communities. Thanks for joining & being involved! »

  • pubblicato più di 2 anni fa

    In risposta a Hello to you all: Hi Chris, Thanks for sharing your story with us! I wish you all the best with your allogeneic transplant. Please let me know if you have any questions about the communities. Hope you find v...

  • pubblicato più di 2 anni fa

    In risposta a Potenziale vaccino per WM in produzione: Hey Phil, Thanks so much for posting this. What a great development for all WM patients! Best, Allie

  • pubblicato più di 2 anni fa

    In risposta a MY 7 YEAR OLD NIECE ONLY CASE IN CUBA WITH GLUT 1: Hello, My name is Allie and I work for NORD- the National Organization for Rare Disorders. What kind of information are you looking for? Has your daughter seen a doctor? I'd love to help, b...

  • pubblicato più di 2 anni fa

    In risposta a Danish Association Annual Conference: Hi Karenj, I just published a summary of this conference in the What? section of the community written by Dorthe of the Danish HSP association: http://www.rarediseasecommunities.org/en/c...

  • pubblicato più di 2 anni fa

    In risposta a Question from another member about the ketogenic diet: Dear Glenna and Samra- Thank you so much for your responses, this will be a huge help to this family. Hope all is well! Alloe