RARE News

RARE News

Mississippi becomes first state in 2022 to sign newborn screening legislation

By admin

17 March 2022

Turning the tide for rare disease

Turning the tide for adult polyglucosan body disease (APBD)

By CONTRIBUTOR

16 March 2022

Turning the tide for rare disease

The Global Genes Rare Disease Diversity, Equity and Inclusion Report: the challenges

By CONTRIBUTOR

16 March 2022

Turning the tide for rare disease

The healing power of storytelling

By CONTRIBUTOR

14 March 2022

Turning the tide for rare disease

Gillian Jackson: bringing positive energy and information to the online BBS community

By CONTRIBUTOR

11 March 2022

RARE News

New research released with recommendations for improving psychological support at the point of a rare disease diagnosis

By admin

10 March 2022

Charity & advocacy

The Vascular Birthmarks Foundation, Dr. Giacomo Colletti, Laserplast, and Candela collaborate to provide pro bono laser treatments

By CONTRIBUTOR

10 March 2022

Turning the tide for rare disease

How 10,000 people living with disability could end the foster care crisis

By CONTRIBUTOR

7 March 2022

RARE News

Myhre Syndrome Foundation awards $150,000 in grants

By admin

3 March 2022

RARE News

Millions of people with rare diseases to benefit from faster diagnosis and better access to treatment

By admin

2 March 2022

Turning the tide for rare disease

Brace! Brace! Brace… for burnout!

By CONTRIBUTOR

2 March 2022

RARE News

THE TAPS SUPPORT FOUNDATION

By admin

28 February 2022

Turning the tide for rare disease

Turning the tide for rare disease

By CONTRIBUTOR

28 February 2022

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

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