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Support for patients

Patient Resources

Volv Global generates insights that create new understanding of disease progression and the patient journey, closing the gap between disease onset and effective treatment.

We help transform lives by giving pharmaceutical innovators powerful insights into difficult-to-diagnose diseases so they can develop effective tools and treatments. 

For the person living with the disease, this results in quicker diagnosis, earlier support from clinicians and the possibility of innovative treatments – whether that’s a new drug or an existing one used in a novel way

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Volv Global for patients

Volv Global works directly with the pharmaceutical companies developing the next generation of therapies. We cannot support individual patients as we do not have connections with physicians or healthcare providers at the local or regional level. 

Recognising that patients living with difficult-to-diagnose diseases may also arrive on our pages, we attempt, below, to offer a few lists of resources for possible approach. This list is necessarily incomplete, and we will continue to update it as we learn more. 

Please note: Volv Global has no official affiliation with any of the organisations mentioned on this page. 

Volv Global started in rare and difficult-to-diagnose diseases

International Rare Disease Organisations

Rare diseases manifest in less than one person among thousands. Doctors have less experience with them, and developers of therapies and payers have less patients to draw understanding from … leaving patients in a healthcare limbo.  

Depending on definitions of “rare,” over 300 million people – or 3.5-5.9% of the world population – suffer from 6,000-10,000 rare diseases. 

EURORDIS – Rare Diseases Europe

NORD – the National Organization for Rare Disorder

Please note: Volv Global has no official affiliation with these organisations.

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Where technology meets Human

Disease-specific Patient Organisations

Upon diagnosis, patients need a deep and thorough understanding of the disease and the likelihood of how the disease will progress.  

Patients also require support to understand treatment options, as well as availability in their geographical location. In certain cases, awareness of available clinical research trials may be useful. 

Rare Disease Support Organizations

Rare Rebels - A Storytelling Movement

Rare Rebels: A Storytelling Movement to Support the Rare Disease Community

Visit Rare Rebels

RAREATIVES

Rareatives: Resources & World Orphan Drug Congress

Visit Rareatives

RARE PATIENT Voice

Rare Patient Voice: Helping Patients & Caregivers Share Their Voices

Visit RPV

Please note: Volv Global has no official affiliation with these organisations.

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