Links to medical information on PID
www.primaryimmune.org
The Immune Deficiency Foundation (IDF) is the national (USA) non-profit
health organization dedicated to improving the diagnosis and
treatment of primary immune deficiency diseases through research
and education. IDF is governed by a Board of Trustees, has an
active Medical Advisory Committe comprised of prominent clinical
immunologists, a nationwide volunteer support network, and a
dedicated professional staff.
www.kinderimmunologie.de
The Working Group Pediatric Immunology (API) consists of doctors
and scientists from Germany, Austria and Switzerland. They are
all occupied witrh research and treatment of PIDs in chsildren
and young adults.
This website serves as an information-page for patients and their
families and general practitioners (GPs) and is directed towards
the German speaking audience.
(Language in the website is German)
Die API ist eine Arbeitsgemeinschaft von Ärzten und Wissenschaftlern
aus Deutschland, Österreich und der Schweiz, die sich mit
der Erkennung, Erforschung und Behandlung von Erkrankungen des
Immunsystems bei Kindern und Jugendlichen beschäftigen.
Diese Homepage soll betroffenen Patienten und ihren Familien
sowie interessierten Ärzten als Orientierung dienen, um sich über
immunologische Erkrankungen und die Versorgungsmöglichkeiten
im deutschen Sprachraum zu informieren.
www.esid.org
The European Society for Immunodeficiencies (ESID) is a non-profit
organization having multiple aims. The main objectives are to
facilitate the exchange of ideas and information among doctors,
nurses, biomedical investigators, patients and their families
concerned with primary immunodeficiency diseases and also to
promote research on causes, mechanisms and treatment of these
disorders. Recently ESID has initiated an educational program.
www.jmfworld.org
The jmfworld website is constantly updating its section on “breaking
News” to bring you the latest news surrounding PI.
www.info4pi.org
The Jeffrey Modell Foundation and the National Primary Immunodeficiency
Ressource Center (NPI) is the central ressource and clearing
house on Primary Immunodeficiency (PI), serving researchers,
scientists, physicians, government, industry, patients and their
families. We want you to be able to access this information quickly,
efficiently and seamlessly. Just follow the recommended markers:
- Professional Medical Information
- General Information
- Patient Information
pin.info4pi.org
Primary Immunodeficiency Network constitutes a physician platform
serving investigators, researchers, and other healthcare providers.
The patient platform will be for patients, family members and patient
organizations.
Each platform is independent and protected, but both platforms
will serve as a central resource to exchange ideas, provide updates,
disseminate information on PI, and bring you breaking news.
There is also considerable information made available for the general
public. Specifically, the platforms include:
- A message board to facilitate communication
- Disease specific survey results from JMF Centers worldwide
- Therapeutic protocols and best practices
- Latest developments in Newborn Screening
- Upcoming symposia and meetings
- Registries link
- Listings of specialized Referral and Diagnostic Centers and
identification of disease-specific specialists worldwide
- Information on funding support and grant opportunities
- And Much More…
The sole mission of PIN is to serve both the physician and patient
communities with an interactive platform, dedicated to research
initiatives, innovative protocols, improved diagnosis, treatment,
and quality of care. Patients will talk to Patients, and Physicians
will talk to Physicians.
www.xlpresearchtrust.org
Aside from fundraising to support medical research, the charity
also has two other key functions:
- To raise awareness of X-linked Lymphoproliferative Syndrom
(XLP) amongst the medical and general public, and
- To act as a point of contact or a “hub” for families
affected by XLP worldwide
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