Top 10 Online Rare Disease Advocates

In Advocacy, Market Access by Cameron5 Comments

Patient advocacy has always played a big role in the world of rare diseases. But as the industry has developed, it’s become clear that the patients really do need to be at the heart of the industry when it comes to orphan drugs. Patient involvement in clinical trials is of course crucial, but developers and CROs have discovered the hidden gold mine that is patient groups and advocates. When it comes to educating your market about diseases, symptoms, and treatments, patient advocates can prove to be valuable tools for developing markets.

Se we’ve put together a list of the top 10 most influential rare disease advocates on world wide web. From twitter and LinkedIn, to patient groups and personal websites, this bunch are taking the word about rare diseases to the masses, and uniting patients with all sorts of diseases under one banner.

View our top 10 online rare disease advocates here >


  1. Robert Pleticha

    To clarify the unclear text on this page: Marianne is a volunteer moderator with EURORDIS, the European Organisation for Rare Diseases on the cryoglobulenemia community. She is a true patient advocate that helps lead the Alliance for Cryoglobulenemia:

  2. Kathy

    I would have liked to seen the following person on the above Top 10 list: Her name is Toni Saunders aka TNNME, website is Toni has amassed 1212 followers and has 1381 following her. She advocates tirelessly for a rare, excruciating painful and debilitating neurological disorder, which she herself suffers from as well; its called Trigeminal Neuralgia, aka the suicide disease. Trigeminal neuralgia is one of the most painful disorders known to mankind and has been identified as one of the top 10 ten most painful diseases. Toni organizes a yearly Trigeminal Neuralgia International Awareness Day; has created a petition for the World Health Org to increase funding for research; contacts bridges and monuments to request they light up in the color Teal in support of Trigeminal neuralgia; works with a group of other Trigeminal Neuralgia Warriors to fundraise and secure money for research. Thank you, Kathy

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