Turning the tide for rare disease

Guiding Grayson: a family’s fight to advocate, educate and save their son, Grayson, from CLN3 Batten Disease

By admin

21 February 2024

RARE News

Patients as Partners in Clinical Research Conference 2024

By admin

19 February 2024

Digital Spotlights

A closer look at the history and science of thyroid eye disease

18 November 2023

A day in the life

A day in the life: a glimpse into my life living with scleroderma

By admin

15 September 2023

RARE News

Pioneering polar adventurer and charity CEO of The Muscle Help Foundation charity to be awarded MBE for services to people with muscular dystrophy

By admin

26 June 2023

RARE News

The Muscle Help Foundation launches 20th anniversary celebrations

By admin

16 May 2023

RARE News

Survey shows 60% of people living with progressive supranuclear palsy and corticobasal degeneration are initially misdiagnosed

By admin

28 April 2023

RARE News

Sickle Cell Disease Association of America to promote clinical trials

By admin

16 March 2023

RARE News

Blueprint Medicines reports clinical data highlighting leadership in developing targeted treatment options for patients with systemic mastocytosis

By admin

22 December 2022

Turning the tide for rare disease

Jessica Massengale: living strong with scleroderma

By admin

24 November 2022

Digital Spotlights

Living with focal segmental glomerulosclerosis (FSGS): Pascaline’s story

24 October 2022

Digital Spotlights

The European Kidney Patients Federation: campaigning for better clinical and holistic care for patients with chronic kidney disease

24 October 2022

Digital Spotlights

Caring for a family member with focal segmental glomerulosclerosis (FSGS): a mother’s story

24 October 2022

Charity & advocacy

Maryland governor proclaims June 11 is KBG syndrome awareness day

By admin

6 June 2022

Charity Partners

Cure CLCN4

30 May 2022

RARE News

Lace up to raise awareness of PSP and CBD: PSPA relaunches fun campaign to raise awareness of rare brain conditions progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD)

By admin

23 May 2022

Patient voice

A story of heartbreak and hope: Juju’s journey with CLN2 Batten disease

By admin

9 May 2022