WAPO.ORG
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About WAPO

The World Alliance of Pituitary Organizations (WAPO) is a self-governed non-profit organization created in order to unite the international pituitary patient community to push for optimal treatment and care for all patients with pituitary and related conditions worldwide. The goal of our organization is to share information, work together and support all pituitary patients’ advocates, to the benefit of all pituitary and adrenal patients worldwide.

WAPO has a great potential value for pituitary patient advocates, as it will serve as:

  • The united global voice of patients in global and national policy making;
  • The point of concentration of correct, evidence-based information on pituitary and related diseases;
  • The center of best practices of pituitary advocacy organization and operations;
  • The driver of global pituitary awareness activities.

WAPO members


Argentina

Australia

Bosnia and Herzegovina

Brazil

Bulgaria

Canada

Chile

Colombia

Costa rica

Denmark

Ecuador

France

Germany

Greece

Italy

Japan

Malaysia

Mexico

The Netherlands

New Zealand

Peru

Philippines

Portugal

Russia

Spain

Sweden

Switzerland

Taiwan

United Kingdom

United States

WAPO history and current status

An annual Global Pituitary Advocacy Meeting in Zurich was organized and sponsored by Novartis from 2012 through 2014. It gathered patient advocates from 25-30 countries. The delegates discussed the most critical issues they are facing as national communities and shared best practices. The delegates met outstanding endocrinologists, nurses, and other professionals, and learned about the diseases and most recent scientific findings in the area.

At the very first Global Pituitary Advocacy Meeting in Zurich, the delegates prepared and signed the Declaration with a list of 10 aspects of patient life and medical care which should be implemented globally

In October 2014 at the 3rd Global Pituitary Advocacy Meeting, the delegates decided to create a global organization named WAPO, The World Alliance of Pituitary Organizations. The first meeting of WAPO Steering Committee took place on October 19, 2014.

In April 2016, the first WAPO Summit took place. It was fully organized by the Steering committee and sponsored by Novartis, Chiasma and StrongbridgeBio. It became the first formal meeting for WAPO incorporation. We have received very positive feedback from participants, sponsors and speakers. You can get more information on the Summit and its results in the report.

At the Summit, the first Board of Directors was elected and, on May 30th 2016, the World Alliance of Pituitary Organizations was registered as an association in the Dutch Chamber of Commerce.

The WAPO Board is currently working on the plan of action 2016-2017.

BOARD OF DIRECTORS

Membership Benefits

As we are global organization, the benefits are global as well. By joining WAPO your organization can count on:

• An international community of alike patient organizations represented in over 40 countries

• Access to a vast base of experience and knowledge of dealing with major issues every pituitary organization face around the world

• All-day-long support, as different organizations are in different Time Zones, your question will not remain unanswered. You can contact other members via personal emails or via our Facebook page.

• Access to a library with major documents on different languages (i.e. official documents, requests to authorities, grant requests and many more)

• An ability to contact other organizations and doctors with broad experience who can help your patients with advice

• International back-up to your organization

Become a member

Membership admission
procedure

The admission procedure is very simple. You may press the “Become a Member” button below and fill in our request from on the web-site. Or write us a letter with your request to join. Admission as well as the Membership itself is free. Please note, as we are pituitary-oriented organization, we can only be useful to specific type of organizations. Please read our requirements to potential members below:

- Be an organization of patients with pituitary and related disorders

- Be formally established organization (not an individual or a group of such)

- Be a non-profit legal entity

News & Events

On 15-17 April, 2016, our first-in- history WAPO Summit was held in Amsterdam, the Netherlands. The 26 patient advocates present at the 2016 Summit represented 17 national organizations from 15 countries. We were very fortunate to have eight medical experts on Acromegaly and Cushing’s, as well as guest speakers on other subjects and of course, six representatives from our sponsor organizations.
Sponsors:
Platinum:Gold:Silver:

October is a month chosen by many patient organisations throughout the world as a month of the disease.Here is a short story of one of WAPO members - APEHI - that held Pituitary Day in 5 October. Please welcome their story: " I'm Sandra from Argentina! I want to share with you all that, we have celebrate the "Pituitary day".We chose this day, 5th of October, because this is the day of birth of one of the most globally important endocrinologist from Argentina - Abraham Guitelman. He worked in a very important hospital and in his own Clinique. We made an open class for the community in the Duran Hospital, where his daughter, doctor Mirtha Guitelman continues his work."

Pituitary Foundation: " The main campaign during Awareness Month for The Pituitary Foundation (UK) was their Get Red Flagged campaign. Get Red Flagged is about encouraging patients with Adrenal Insufficiency to register with their Ambulance Trust. Once a patient is red flagged on the Trust’s system, if the patient ever calls 999, the call will be flagged for priority attendance by a vehicle carrying emergency hydrocortisone.There was a great response to this campaign with 260 patients getting themselves “Red Flagged”.

PITUITARY DISORDERS

Gigantism is a rare condition that causes abnormal growth in children. This change is most notable in terms of height, but girth is affected as well. It occurs when your child’s pituitary gland makes too much growth hormone, which is also known as somatotropin... read more from healthline.com

As their name indicates, these relatively common pituitary adenomas do not result in excess hormone production. Instead they typically cause symptoms because of increasing size and pressure effect on the normal pituitary gland and on structures near the pituitary such as the optic nerves and chiasm... read more from pituitary.org

Acromegaly is the same disorder of IGF-I as Gigantism excess but occurs after the growth plate cartilage fuses in adulthood... read more from medscape.com or read more from acromegaly.care

Cushing disease is a condition in which the pituitary gland releases too much adrenocorticotropic hormone (ACTH). The pituitary gland is an organ of the endocrine system. Cushing disease is a form of Cushing syndrome read more from nih.gov

Growth hormone deficiency (GHD) is a medical condition, caused by problems arising in the pituitary gland, in which the body does not produce enough growth hormone (GH). Growth hormone, also called somatropin, is a polypeptide hormone which stimulates growth and cell reproduction read more from wikipedia.org

The syndrome of inappropriate antidiuretic hormone (ADH) secretion (SIADH) is defined by the hyponatremia and hypo-osmolality resulting from inappropriate, continued secretion or action of the hormone despite normal or increased plasma volume, which results in impaired water excretion. The key to understanding the pathophysiology, signs, symptoms, and treatment of SIADH is the awareness that the hyponatremia results from an excess of water rather than a deficiency of sodium read more from medscape.com

Diabetes insipidus is an uncommon condition in which the kidneys are unable to prevent the excretion of water read more from nih.gov

Sheehan's syndrome, also known as Simmond's syndrome, postpartum hypopituitarism or postpartum pituitary gland necrosis, is hypopituitarism (decreased functioning of the pituitary gland), caused by ischemic necrosis due to blood loss and hypovolemic shock during and after childbirth read more from wikipedia.org

Pickardt syndrome (also Pickardt's syndrome or Pickardt–Fahlbusch syndrome) denotes a rare form of tertiary hypothyroidism that is caused by interruption of the portal veins connecting hypothalamus and pituitary read more from wikipedia.org

Hyperpituitarism is a condition due to the primary hypersecretion of pituitary hormones, it typically results from a pituitary adenoma. Children with hyperpituitarism is rare, disruption of growth regulation, either because of hormone hypersecretion or because of manifestations caused by local compression of the adenoma can occur read more from wikipedia.org

Hypopituitarism is a clinical syndrome of deficiency in pituitary hormone production. This may result from disorders involving the pituitary gland, hypothalamus, or surrounding structures. Panhypopituitarism refers to involvement of all pituitary hormones; however, only 1 or more pituitary hormones are often involved, resulting in isolated or partial hypopituitarism. (See Pathophysiology and Etiology) read more from medscape.com

WAPO members


Argentina

Australia

Bosnia and Herzegovina

Brazil

Bulgaria

Canada

Chile

Colombia

Costa rica

Denmark

Ecuador

France

Germany

Greece

Italy

Japan

Malaysia

Mexico

The Netherlands

New Zealand

Peru

Philippines

Portugal

Russia

Spain

Sweden

Switzerland

Taiwan

United Kingdom

United States

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