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Charity & advocacy
Charity & advocacy
Teach RARE: a family’s rare disease journey continues by supporting caregivers with special education teaching and learning
By CONTRIBUTOR
15 March 2023
Charity & advocacy
“Are we there yet?” Designing communication initiatives based on community needs – the Comms Working Group at SMA Europe
By CONTRIBUTOR
15 March 2023
Charity & advocacy
“Rare disease knows no borders”: EURORDIS-Rare Diseases Europe and US-based EveryLife Foundation for Rare Diseases team up against the global public health crisis of rare disease
By CONTRIBUTOR
8 March 2023
Industry Insights
The new world of gene therapy: five questions answered
By CONTRIBUTOR
8 March 2023
Industry Insights
Red tape is ruining the potential of partnerships between patient groups and the pharmaceutical industry – it’s time for change
By CONTRIBUTOR
1 March 2023
RARE News
RARE Youth Revolution announces new genetics and relationships project — ‘My life, my genetics’
By admin
28 February 2023
Science & tech
Optimising market access for rare disease products: insights from Craig Caceci
By CONTRIBUTOR
27 February 2023
RARE News
Operationalize: Expanded Access Programs Summit (March 21-23, 2023, Boston, MA)
By admin
24 February 2023
Industry Insights
Finding investment for gene therapies
By CONTRIBUTOR
22 February 2023
RARE News
Celebrating Rare Disease Day and 40 years of the Orphan Drug Act advocating for rare disease patients and their families
By admin
22 February 2023
RARE News
Project Sebastian is pleased to announce our second annual rare warrior 5 x 5 challenge!
By admin
17 February 2023
RARE News
Three small research grants awarded
By admin
17 February 2023
RARE News
CureDuchenne strengthens philanthropic business development with addition of vice president of corporate and donor relations
By admin
16 February 2023
Turning the tide for rare disease
Aaron Jackson: raising awareness of organ donation, and bringing hope to the transplant community
By CONTRIBUTOR
15 February 2023
RARE News
Sure announced as headline sponsor for Parallel Windsor 2023
By admin
13 February 2023
RARE Ramblings
Richard’s RARE Ramblings: FEAR!
By CONTRIBUTOR
8 February 2023
RARE News
Shining the light on tube feeding
By admin
5 February 2023
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