Associação Portuguesa de Doentes com Imunodeficiências Primárias

APDIP is a non-profit association founded to support patients with primary immunodeficiencies in Portugal.

APDIP

Portuguese Association of Patients with Primary Immunodeficiencies

Associação Portuguesa de Hemofilia e de outras Coagulopatias Congénitas 

APH collaborates with government agencies to ensure adequate diagnosis, treatment, and follow-up care for people with bleeding disorders. 

APH 

Portuguese Association of Hemophilia 

The Association of Hemophilia Clinic Directors of Canada

AHCDC is an organization of Hemophilia Clinic Directors from across Canada. The organization...

AHCDC is an organization of Hemophilia Clinic Directors from across Canada. The organization shares a common interest in improving the treatment of people with hemophilia. AHCDC strives to ensure excellent care for persons with congenital bleeding disorders in Canada through clinical services, research and education. 

The Association of Hemophilia Clinic Directors 

Hemophilia Ontario

Founded in 1956, Hemophilia Ontario is the Ontario Chapter of the Canadian....

Founded in 1956, Hemophilia Ontario is the Ontario Chapter of the Canadian Hemophilia Society. Its mission is to strive to improve the health and quality of life for all people with inherited bleeding disorders, and to find a cure.

Canadian Hemophilia Society

The CHS is committed to improving the health and quality of life of all people in Canada with...

The CHS is committed to improving the health and quality of life of all people in Canada with inherited bleeding disorders and ultimately finding cures. Its vision is a world free from the pain and suffering of inherited bleeding disorders. The CHS is affiliated with the World Federation of Hemophilia. 

Canadian Hemophilia Society (CHS)

Network of Rare Blood Disorder Organizations

The NRBDO is a pan Canadian coalition of not-for-profit organizations...

The NRBDO is a pan Canadian coalition of not-for-profit organizations representing people with rare blood disorders and/or people with a chronic condition who are recipients of blood or blood products or their alternatives.

Network of Rare Blood Disorder Organizations(NRBD)

Answering TTP Foundation 

Answering TTP Foundation provides patient...

Answering TTP Foundation provides patient support, TTP education, and fundraising support and guidance for TTP patients. 

Answering TTP(Thrombotic Thrombocytopenic Purpura)

Association des Patients Immunodeficients du Québec

APIQ (L’Association des Patients Immunodéficients du Québec).........

APIQ (L’Association des Patients Immunodéficients du Québec) is a non-profit organization that brings together patients with immune deficiencies (ID) as well as their families and health professionals interested in this disease. APIQ works with scientific committees and other patient groups around the world to raise awareness of immunodeficiency, promote early diagnosis and defend the interests of those affected.

L'Assoc. des Patients Immunodéficients du Québec

Immunodeficiency Canada IDC

Immunodeficiency Canada provides patient support...

Immunodeficiency Canada provides patient support, education, and research for a cure for Primary Immunodeficiency (PI).

 Immunodeficiency Canada (IDC)

CIPO and APIQ 

CIPO (Canadian Immunodeficiencies Patient Organization) ...

CIPO (Canadian Immunodeficiencies Patient Organization) provides advocacy, support and education to all immunodeficient patients diagnosed and not yet diagnosed in Canada. 

Canadian Immunodeficiencies Patient Organization 

GBS/CIDP foundation

GBS/CIDP provides support for persons affected by...

GBS/CIDP provides support for persons affected by GBS (Guillain-Barre Syndrome), CIDP (Chronic Inflammatory Demyelinating Polyneuropathy), or variants such as MMN (Multifocal Motor Neuropathy). The foundation engages in advocacy, including treatment access to improve the quality of life for individuals and families affected by GBS, CIDP, or variants such as MMN.

GBS/CIDP Foundation 

International Patient Organization for Primary Immunodeficiency's

The International Patient Organisation for Primary Immunodeficiencies (IPOPI) is a non

The International Patient Organisation for Primary Immunodeficiencies (IPOPI) is a non-profit international organisation and the leading advocate for primary immunodeficiency (PID) patients worldwide working in collaboration with patients, doctors, politicians, regulators, pharmaceutical industry and other relevant stakeholders. IPOPI integrates as well national PID patient organisations dedicated to improving awareness, access to early diagnosis and optimal treatments for primary immunodeficiency patients worldwide through global collaboration. 

IPOPI

Foundation for Primary Immune Deficiency Diseases

The mission of the Foundation for Primary Immune Deficiency Diseases is to support education ...

The mission of the Foundation for Primary Immune Deficiency Diseases is to support education about, diagnosis and treatment of, and research into primary immunodeficiency diseases in India and the USA. 

Immune Deficiency Foundation

The Immune Deficiency Foundation is a national patient organisation dedicated to improving ...

The Immune Deficiency Foundation is a national patient organisation dedicated to improving the diagnosis, treatment and quality of life of people with primary immunodeficiency diseases through advocacy, education and research.

Jeffrey Modell Foundation

The Jeffrey Modell Foundation was established in memory of its namesake, who died of ...

The Jeffrey Modell Foundation was established in memory of its namesake, who died of pneumonia at the age of 15 due to an underlying primary immunodeficiency disease (PID). The Foundation is dedicated to early and precise diagnosis, meaningful treatments, and ultimately cures for the ever-increasing number of known PIDs. The Foundation works for clinical and basic research to better understand and treat PIDs; serves as a national and international information and education resource regarding the diagnosis and treatment of genetic immunodeficiency; advocates on behalf of patients and families to ensure their access to comprehensive care; and promotes public awareness of PIDs.

Save One Life

Save One Life was founded in 2000. It supports people with bleeding disorders living in ...

Save One Life was founded in 2000. It supports people with bleeding disorders living in developing countries to live independent and productive lives by having vital access to medical and economic resources. 

Hemophilia Federation of America

Hemophilia Federation of America, Inc. (HFA) is a patient education, services and advocacy ...

Hemophilia Federation of America, Inc. (HFA) is a patient education, services and advocacy organisation serving the rare bleeding disorders community. HFA is exclusively focused on the bleeding disorders patient and caregiver community.Based in Washington, D.C., HFA works in conjunction with other national and state organisations on behalf of families living with bleeding disorders.  

National Hemophilia Foundation

The National Hemophilia Foundation (NHF) is dedicated to finding better treatments and ...

The National Hemophilia Foundation (NHF) is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. Established in 1948, NHF has chapters throughout the USA. Its programmes and initiatives are made possible through the generosity of individuals, corporations and foundations as well as through a cooperative agreement with the Centers for Disease Control and Prevention. 

Primary Immunodeficiency UK (PID UK)

Primary Immunodeficiency UK (PID UK works with healthcare professionals and others to improve ...

Primary Immunodeficiency UK (PID UK works with healthcare professionals and others to improve the care and life of people affected by primary immunodeficiencies (PID).  The charity provides educational information, and raises awareness and understanding of PID to facilitate earlier and accurate diagnosis, better monitoring and improved care.  The charity supports patients in many ways including helping them establish their own support groups.  PID UK’s website features a growing library of patient resources, including clinical information, practical guidance on living with a PID and patient stories to help people gain a better understanding of PID. 

Primary Immunodeficiencies Patient Organization (PIPO) Limited

Octapharma’s help enabled PIPO to organise the first primary immunodeficiency symposium held ...

Octapharma’s help enabled PIPO to organise the first primary immunodeficiency (PID) symposium held in Uganda. The goal was to build connections between PIPO, doctors and the health authority in order to raise the awareness of PIDs among both the public and the medical profession.

Primary Immunodeficiencies Patient Organization 

Primär Immunbrist Organisationen – PIO

PIO is an organisation for those with congenital immune deficiency, their families, healthcare ...

PIO is an organisation for those with congenital immune deficiency, their families, healthcare professionals and all other interested parties.

Förbundet Blödarsjuka i Sverige (FBIS)

FBIS is an organisation for people with haemophilia.

FBIS is an organisation for people with haemophilia, their families and all other interested parties.

AFNP

AFNP works in the field of acquired dysimmune and inflammatory peripheral neuropathies ...

AFNP works in the field of acquired dysimmune and inflammatory peripheral neuropathies. The organisation helps people with such diseases, supports their families and works to promote better knowledge of, and research into, such conditions. Octapharma worked with AFNP to help people use the FLEXIG following their immunoglobulin treatment.

IRIS

Formed in 1998 by the families of children with primary immunodeficiency disorders (PID), IRIS ...

Formed in 1998 by the families of children with primary immunodeficiency disorders (PID), IRIS has nearly 500 members. IRIS disseminates information to health professionals and the public, supports the families of patients and research for new treatments, optimises access to care and works to improve the diagnosis rates of PID. Octapharma has helped IRIS create resources to help children understand how the immune system works  and helped with the FLEXIG app which enables people to better monitor their immunoglobulin treatment.

AFH is the French national association for people with rare bleeding disorders. Founded in ...

AFH is the French national association for people with rare bleeding disorders. Founded in 1955, AFH promotes the rights of people with haemophilia, von Willebrand disease and other genetically influenced bleeding disorders. Octapharma supports AFH in its advocacy for continuous improvement of knowledge, treatment and management of rare bleeding disorders. 

National association of PID patients

The association represents people with primary immune deficiency (PID) and their families ...

The association represents people with primary immune deficiency (PID) and their families in Brazil. It works to improve the quality of life of carriers of congenital PID by fighting for their rights and understanding their strengths and potential.

Brazilian Federation of Haemophilia 

FBH represents more than 26,000 patients and their families. The organisation campaigns for ...

FBH represents more than 26,000 patients and their families. The organisation campaigns for better treatment and quality of life for all people with haemophilia, von Willebrand disease and other hereditary bleeding disorders in Brazil.

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