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4 articles from the last 90 days matching "partnership"

AdvocacyRSSApr 22

Collaboration aims to improve design of FSHD clinical trials

Three organizations that work with facioscapulohumeral muscular dystrophy (FSHD) patients are joining together to make clinical trials better. FSHD is a rare muscle disease that causes weakness in the face, shoulders, and upper arms. This partnership wants to improve how these trials are designed so they can test new treatments more effectively.

WHY IT MATTERSBetter-designed clinical trials mean faster progress toward treatments for FSHD, and patient input through the FSHD Society ensures trials are structured in ways that actually work for people living with the disease.
ℹ Good to knowFacioscapulohumeral muscular dystrophy
PolicyPUBMEDApr 1

Patient partnership model in rare and complex rheumatological conditions: research and beyond in European Reference Network ReCONNET.

A European network for rare connective tissue diseases has created a new model where patients are treated as equal partners in research and care decisions. Instead of doctors alone deciding what to study and how to treat patients, this network includes patients in every step—from identifying problems to writing research papers together. This approach helps address long diagnostic delays and gaps in care that patients with these rare diseases often face.

WHY IT MATTERSPatients with rare connective tissue diseases can now directly influence research priorities and treatment approaches through structured partnership roles, rather than having decisions made without their input.
💬 Ask your doctorrare connective tissue diseasessystemic sclerosissystemic lupus erythematosus
AdvocacyPRESS RELEASEMar 26

National Organization for Rare Disorders and OpenEvidence Partner to Bring AI-Powered Rare Disease Resources to Clinicians and Patients Worldwide

NORD and OpenEvidence announced a partnership to create AI-powered tools that help doctors and patients find reliable information about rare diseases. These tools will use artificial intelligence to organize and review medical information, making it easier for people with rare diseases to access trustworthy resources and get better care.

WHY IT MATTERSThis partnership expands access to expert-reviewed rare disease information through AI technology, potentially helping patients with any rare disease find accurate medical resources and connect with specialists more easily.
ℹ Good to know
AdvocacyRSSMar 26

National Organization for Rare Disorders and OpenEvidence Partner to Bring AI-Powered Rare Disease Resources to Clinicians and Patients Worldwide

NORD, a major rare disease organization, is partnering with OpenEvidence to create AI-powered tools that help doctors and patients find reliable information about rare diseases. This partnership aims to make it easier for people worldwide to access trustworthy resources about their conditions and treatment options.

WHY IT MATTERSThis partnership could help patients with rare diseases get faster access to accurate, expert-reviewed information from their doctors, potentially reducing diagnostic delays and improving treatment decisions.
ℹ Good to know

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