Industry Insights

Industry Insights

Living with Gaucher disease: challenging encounters along the patient journey

By CONTRIBUTOR

17 February 2022

RARE News

Teddington Trust and the XP Support Group to join forces to strengthen support for the xeroderma pigmentosum community

By admin

15 February 2022

Patient voice

Cavernomas—a patient’s efforts to understand the possible systemic implications of a defect in the KRIT1 (CCM1) gene

By CONTRIBUTOR

14 February 2022

Patient voice

The global disability community and the DE&I discussion: a match that needs to be made

By CONTRIBUTOR

9 February 2022

RARE News

The Neuromuscular Disease Foundation Takes the Lead

By admin

4 February 2022

RARE News

The urgent case for patient assistance funding

By admin

3 February 2022

Patient voice

Everyone, on the bus!

By CONTRIBUTOR

28 January 2022

A day in the life

My year at RARE Youth Revolution

By CONTRIBUTOR

26 January 2022

RARE News

NORD’s RareLaunch Program Announces Expanded Course Learning to Help Launch and Grow Rare Disease Nonprofits

By admin

20 January 2022

RARE News

RARE Revolution promotions announcement

By admin

7 January 2022

Rare insights

Publication Finds that Modernization of U.S. Newborn Screening System is Necessary, Calls for Change

By admin

6 January 2022

RARE News

Rare disease clinic for Poland Syndrome

By admin

21 December 2021

RARE News

Foundation of the RE(ACT) Discovery Institute

By admin

14 December 2021

Charity & advocacy

Living with muscular dystrophy in Nepal

By CONTRIBUTOR

13 December 2021

RARE News

Sickle Cell Disease Association of America names Regina Hartfield CEO

By admin

10 December 2021

Patient voice

Caring for his children with VICI syndrome: Muzaffar Anjum’s story

By CONTRIBUTOR

8 December 2021

Patient voice

“Do you hear me?”

By CONTRIBUTOR

3 December 2021

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