Publication date: 15 Apr 2026
Your Input Wanted for AI Survey
Artificial intelligence (AI) has rapidly transformed how we get information. Can AI be harnessed to better serve the rare disease community? RareShare and the Rare Genomics Institute are considering the creation of an AI-driven chatbot tool for rare diseases. We envision that such a tool will be accessed through a webpage and include dedicated apps that can link users to existing generative AI resources. The apps can then be queried to provide information on a broad range of topics pertaining to rare diseases. Multiple apps will allow users to assess information from different sources for accuracy, depth and relevance. We plan to provide detailed instructions to enable even AI novices to use the apps. The tool will also include links to both the RareShare and Rare Genomics Institute websites for other resources . As always, our services will be free of charge.
We need your help to design and build such an online tool structured to meet the needs of our users. We have prepared a brief questionnaire to assess how an AI tool can benefit a rare disease-focused audience. Please take a few minutes to share your input by completing the survey by April 30. Your responses will be kept confidential. Survey
RareShare Disease Summaries
RareShare continues to provide scientifically vetted summary information on its disease community pages. We have added recent summaries to over a quarter of our more than 1,000 communities, initially targeting those with the most members. Disease summary information is posted in the Community Details section of each community page on the RareShare website. Since late last year, the following communities have received disease summary updates.
Carnitine-acylcarnitine translocase deficiency
Carney complex
Cavernous angioma
Cervical cancer
Guillain-Barre syndrome
Idiopathic intracranial hypertension
Inborn errors of immunity
Mal de barquement syndrome
Moebius syndrome
Multifocal neuropathy with conduction block
Multiple epiphyseal dysplasia
Multiple endocrine neoplasia type 1
Parsonage-Turner syndrome
Periodic fever, aphthous stomatitis, pharyngitis and adenitis (PFAPA) syndrome
Pheochromocytoma and paraganglioma
Phenylketonuria
Poland syndrome
Polycythemia vera
Postural orthostatic tachycardia syndrome (POTS)
Primary ciliary dyskinesia
Primary intestinal lymphangiectasia
Primary orthostatic tremor
Psuedohypoaldosteronism
Pyoderma gangrenosum
Transverse myelitis
Triple X syndrome
Turner syndrome
Engage With Your Community
RareShare works best with active participation of its members. If you haven't visited your community page or made a post recently, please do so. Others would like to learn and hear from you!