P.A.N.D.O.R.A. (VS)

Patient Alliance for Neuroendocrineimmune Disorders Organisation for Research and Advocacy

Missie en visie

Through the following efforts, we seek to alleviate the suffering caused by neuro-endocrine-immune diseases, including ME/CFS, fibromyalgia syndrome, multiple chemical sensitivities / environmental illnesses, chronic Lyme disease and Gulf War illnesses:

Advocating for improving patient quality of life
Community awareness projects
Patient education programs and conferences
Physician education programs
Research grants
Partnerships with other patient organizations
Collaborations with academia and biotech industry

We advocate for and work toward establishing centers of excellence for research, clinical care, physician education and government services assistance for NEIDs patients and their families.

Te bereiken via info@pandoraorg.net

Riksföreningen för ME-patienter (Zweden)

De RME van Zweden werd hervat in 2002. De organisatie bestaat uit mensen met ME/CVS en hun doelstellingen zijn om de overheid, het publiek en de leden voor te lichten over ME/CVS en om samen te werken met artsen, deskundigen en onderzoekers in gebieden die de mogelijkheden zal verbeteren m.b.t. een correcte onderzoek, diagnose en behandeling.

Contact: Lisa Forstenius, info@rme.nu

Lid van Europese ME Alliantie (EMEA)

Solve ME/CFS Initiative

The Solve ME/CFS Initiative (SMCI) has been the leading organization focused on myalgic encephalomyelitis (ME) and Chronic
Fatigue Syndrome (CFS) since being founded in 1987.

SMCI envisions a world free of ME/CFS and
works steadfastly to make this disease understood, diagnosable and treatable. SMCI seeks to
actively engage the entire ME/CFS community in research, works to accelerate the discovery of
safe and effective treatments, and strives for an aggressive expansion of funding towards a cure.

Tymes Trust

Tymes Trust is de langst gevestigde Britse dienst voor kinderen en jongeren met ME en hun familie. Het is een gerespecteerd nationaal goed doel wiens volledige professionele team zich vrijwillig inzet. Ze werken constant samen met artsen, leraars en andere specialisten.

Directeur: Jane Colby. Auteur van de paper “Valse beschuldigingen van kindermisbruik bij gevallen van ME tijdens de kinderjaren”.

WE & ME Foundation

With a sense of urgency, we rally for recognition, education, and research, aiming to ensure that every individual with ME/CFS receives the compassionate and effective care, as well as the necessary support they deserve, and ultimately a cure.

The Story

The WE&ME Foundation (formerly TEMPI Foundation) was established in 2020 by the Ströck family and is situated in Vienna, Austria, where the family is renowned for their “Ströck” bakeries, which have delighted generations with their baked goods.

The Ströck family’s journey has been profoundly influenced by the impact of ME/CFS, shaping the essence and purpose of the WE&ME Foundation with unwavering determination. Two brothers, Christoph and Philipp Ströck, both affected by ME/CFS, guide the foundation’s mission. Christoph, the younger sibling, was diagnosed in 2016 after years of illness, and his condition worsened due to misconceptions surrounding ME/CFS. In 2018, Philipp, the older sibling, also received a diagnosis.

The family’s firsthand experience revealed the scarcity of doctors with expertise in diagnosing and treating ME/CFS. Over the years, the Ströck family has come to realize the significance of the grievances surrounding social security and support for the millions of affected ME/CFS patients.

The ongoing shortage of professionals in this field has led to patients being left to navigate their journey for diagnosis and necessary assistance independently, a situation that frequently contributes to irreversible deterioration in patients’ health. In many cases, they are unable to return to their jobs, leading to a lack of social security support. The situation patients and their loved ones find themselves in on top of the reality of this cruel illness are entirely unacceptable.

Initially self-funded, the foundation now strives to raise funds and awareness for research to improve the situation for patients and their loved ones.

The Ströck family and the dedicated WE&ME team are committed to funding groundbreaking research that unveils the complexities of ME/CFS, moving closer to effective treatments and a cure. Our unwavering commitment, we hope, is reflected in every initiative we undertake, as we strive to alleviate the burdens imposed by ME/CFS.

World ME Alliance

World ME Alliance is een wereldwijde samenwerking van verenigingen die opkomen voor personen met ME/cvs.

De World ME Alliance wil ervaringen uitwisselen tussen ME/cvs-verenigingen, wereldwijde bewustmakingsacties coördineren en de Wereldgezondheidsorganisatie aanmoedigen actie te ondernemen tegen ME/cvs.

Voor België is 12ME lid van deze overkoepelende organisatie.

Wereldwijd