Teresa Scruton's Page

Profile Information

Are you participating in OAWeek 2021? (You can update this later): Just gathering information

First name: Teresa

Last name: Scruton

Organization/institution name: Orphan Disease Network

Type of institution: Non-profit

What's your position?: Other

What's the level of OA awareness where you are?: High

What are your goals for OA Week?: My website, OrphanDiseaseNetwork.org provides information and current research on several orphan diseases for families and individuals suffering from rare, potentially fatal diseases. Providing free, open access to research helps people with rare diseases educate themselves about their disease. Most general practitioners and other medical staff are not as informed about these rare diseases as the patient and their family, because the patient and family MUST be informed with up-to-date research about their disease to avoid potentially fatal medical mistakes with this under-served population.

Teresa Scruton's Photos

Teresa Scruton's Blog

I represent families with rare, orphan diseases

These rare, orphan diseases have severe, often life-threatening consequences, and it is all too common for physicians, and staff at Emergency Rooms to have never heard of these diseases, let alone know how to appropriately treat them when in crisis.

Open Access is vital to this community of people who must educate themselves about their disease, because they will have to educate their physicians.

Open Access allows patients to print out current literature about their disease…

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Posted on October 15, 2012 at 2:53am — 2 Comments

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At 7:56am on October 15, 2012, Shkumbim A Thaqi said…: Dear Teresa.

Thank you for feedback to me in menatime. I have visit some of your
information but for more we need to chat and to share contact together.!Let me know aproximately where is your free time for chat together ?

Cordyally;

Shkumbim