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Posts by CONTRIBUTOR

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CONTRIBUTOR

Holly Landrum Peay of Faegre Drinker Consulting

By CONTRIBUTOR

20 October 2025

Putting you in the heart of the rare community – Action for XP

By CONTRIBUTOR

13 October 2025

How innovative trial designs de-risk drug development in rare diseases

By CONTRIBUTOR

6 October 2025

Stacy Pike-Langenfeld of KrabbeConnect

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6 October 2025

Putting you in the heart of the rare community – Childhood Tumour Trust (CTT)

By CONTRIBUTOR

29 September 2025

Alice Tuff-Lacey of Genomics England

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22 September 2025

Putting you in the heart of the rare community – National Scleroderma Foundation

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15 September 2025

Nisha Venugopal of Indo US Organization for Rare Diseases

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8 September 2025

Putting you in the heart of the rare community – International Niemann-Pick Disease Registry (INPDR)

By CONTRIBUTOR

1 September 2025

Sondra Butterworth: Why building trust is the cornerstone of PPIE

By CONTRIBUTOR

25 August 2025

The trust–success ratio: Why building trust is the cornerstone of PPIE (Public Patient Participation Inclusive and Engagement) – A patient’s perspective

By CONTRIBUTOR

25 August 2025

incognito: the secret life of a…rare disease board trustee

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25 August 2025

Virginie Bros-Facer of EURORDIS – Rare Diseases Europe

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25 August 2025

Putting you in the heart of the rare community – Sjögren’s UK

By CONTRIBUTOR

18 August 2025

incognito: the secret life of a…community CEO

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11 August 2025

Annie Kennedy of EveryLife Foundation for Rare Diseases

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11 August 2025

Putting you in the heart of the rare community – CDKL5 UK

By CONTRIBUTOR

4 August 2025

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