Engage with rare disease community

[bschilder]

Identify ways to share our findings, and get members of the rare disease community to engage with our resources (e.g. web apps).

Stakeholders

• Researchers
• Healthcare providers (doctors, nurses, physician assistants)
• Rare disease patients
• Family of rare disease patients

Rare disease networks

• Nord
• Rare Disease UK
• Genetic and Rare Diseases (GARD) / NIH
• Rare Diseases International
• The UK Rare Diseases Framework
• NIH AMP: Bespoke Gene Therapy Consortium
• Lupus UK
• Foundation for ARID1B
• Parkinson's UK (for monogenic forms of PD)
• The British Society for Genetic Medicine
• Rare Trait Hope Fund
• Every Cure
• Genetic Alliance UK
• European Organisation for Rare Diseases

Contacts

• Caroline Olshewsky: head of Lupus UK and Foundation for ARID1B. Met her at Crick Institute RD conference and she was very excited to discuss our results.

[KittyMurphy]

Listened to a rare disease podcast today and they mentioned a rare disease magazine that we could get involved with: https://rarerevolutionmagazine.com/

[NathanSkene]

Good spot. Are you up for getting in touch with them and asking how we could go about preparing an article and if they’d be interested in writing one? From: Kitty Murphy ***@***.***> Date: Friday, 2 June 2023 at 11:20 To: neurogenomics/rare_disease_celltyping ***@***.***> Cc: Skene, Nathan G ***@***.***>, Assign ***@***.***> Subject: Re: [neurogenomics/rare_disease_celltyping] Engage with rare disease community (Issue #46) This email from ***@***.*** originates from outside Imperial. Do not click on links and attachments unless you recognise the sender. If you trust the sender, add them to your safe senders list<https://spam.ic.ac.uk/SpamConsole/Senders.aspx> to disable email stamping for this address. Listened to a rare disease podcast today and they mentioned a rare disease magazine that we could get involved with: https://rarerevolutionmagazine.com/ — Reply to this email directly, view it on GitHub<#46 (comment)>, or unsubscribe<https://github.com/notifications/unsubscribe-auth/AH5ZPE3U5ZE53L3TBMD35YLXJG465ANCNFSM6AAAAAAUVOZV7I>. You are receiving this because you were assigned.Message ID: ***@***.***>