Patient voice

Patient voice

Finding Joy and Keeping Joy: Morven-May MacCallum’s 17-year battle with Lyme disease

By CONTRIBUTOR

21 August 2024

Patient voice

Looking for the positives during hard times: visual snow syndrome

By CONTRIBUTOR

21 August 2024

RARE News

Ladies Luncheon Newport Beach to debut at Shady Canyon Golf Club on October 15 benefiting CureDuchenne

By admin

20 August 2024

A day in the life

#JosiahStrong: Living with familial cold autoinflammatory syndrome—one year on

By CONTRIBUTOR

14 August 2024

RARE News

Introducing the Vascular Voice Network

By admin

12 August 2024

RARE News

PSP Association increases support to families

By admin

12 August 2024

RARE News

Nod to Naz art exhibit opens in California

By admin

9 August 2024

Letters

A troubling development in access to treatment for people living with primary biliary cholangitis (PBC)

By CONTRIBUTOR

7 August 2024

RARE News

Timothy Syndrome Alliance (TSA) looks to recruit Trustee

By admin

2 August 2024

RARE News

CMT Research Foundation invests in project at nationwide children’s hospital to develop improved gene therapy delivery systems for several types of CMT

By admin

1 August 2024

Industry Insights

Cell and gene therapies: Where are we now?

By CONTRIBUTOR

31 July 2024

RARE News

Our Voice, Our Rights, Our Future: The ALLIANCE report and video explores key themes and feedback from its 2024 annual conference

By admin

31 July 2024

RARE News

Innov4-ePiK: Innovative diagnostic and therapeutic approaches in potassium channel developmental and epileptic encephalopathies (K-DEEs) using 4P for medicine

By admin

29 July 2024

RARE News

cTAP Study indicates Duchenne muscular dystrophy clinical trial enrollment criteria should expand beyond ambulatory status

By admin

29 July 2024

RARE News

Landmarks shine pink and purple for National Eosinophilic Week

By admin

29 July 2024

Letters

Sarcoma Awareness Month: Sarcomas demand urgent awareness and education to prevent poor outcomes

By CONTRIBUTOR

24 July 2024

Turning the tide for rare disease

I am Celine Dion: The stiff person syndrome community reacts to the release of Dion’s documentary

By CONTRIBUTOR

22 July 2024

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