Why is it so challenging to share the story of rare disease patients or rare disease caregivers?

Often this is because industry views them not as people, not as patients, but as consumers. Most consumers are easy to evaluate. We can, most times, muddle through our own experiences to understand their goals and expectations.

Rare is different. 

To adequately tell the story of rare disease patients and their caregivers— we have to view them as what they are: whole, real people with existing lives facing a disease that comes with no rulebook, no guidance even from the world’s top experts. 

It can be a struggle for media teams to connect with patients with complex diseases—not because they do not care about this reality, but because they simply do not know how to broach this conversation in an appropriate way.  The results of a stilted exchange between an agency, publicist, or marketing team with these advocates can lead to inadequate copy and unrealistic campaigns.

It helps to have a media expert and best-selling author as your liaison who also happens to be a rare disease patient herself.

Why is it so hard for biotechs and pharma to form partnerships with non profits?

Organizations are highly protective over patient data and leads. Biotechs and corporations can often be viewed as competition instead of as a resource. Non profits may want purely monetary partnerships, which can create an unsustainable precedent for many companies struggling to grow datasets.

How can we overcome hurtles like these to advance disease understanding?

Contact Ilana


  • Patient Advocacy Strategy

Taking a personalized approach to each client, Ilana works with digital health agencies, public relation firms, marketing groups, and directly with pharmaceutical companies, biotechs, and health community product developers to fine-tune and target campaigns to patient audiences. With over 17 years of connection with health audiences, she is positioned to create and assist in the creation of patient-centric copy and storytelling that engages patients, caregivers and HCP’s on all levels.

  • Non Profit Collaboration & Matching

Is your company interested in partnering with a leading health non profit but struggling to make the connection in a beneficial way for both parties? Ilana has assisted corporations for over ten years in creating mutually beneficial public partnerships with nonprofits that leads to growth and data sharing that may eventually advance disease understanding and research.

  • Patient Influencers and Ambassador Program

Patients trust other patients, which is why companies are consistently turning towards social media to show efficacy and build name recognition with their products through influential social accounts.

  • Short Form Video 

The game is can I make them feel something in thirty seconds or less? The prize? Viral attention for your campaign. With the rise of TikTok and Instagram Reels, does your company know how to make audiences feel something and take action? Ilana can help. She’s aided in orchestrating content for TikTok campaigns and her organic videos garnered over half a million views.


Contact Ilana if your brand needs the following:

  • To create partnerships with advocacy groups and health communities to assist in quick, effective user recruitment or engagement
  • To create goodwill and brand recognition in the health community to propel future partnerships
  • To launch campaigns on the three pillars of patient engagement in a company’s public image: credibility, transparency, and worth
  • To develop strong media relationships that result in headlines that will bring organic interest to the brand
  • To develop strategy, landscape and insight decks on specific rare communities for team understanding
  • To develop an awareness calendar, an advocacy playbook and processes for internal communications; work directly with key stakeholders to align on the messaging and communications strategy
  • To develop a patient advocacy public relations strategy and execution in collaboration with existing media and executive teams
  • To build support social media teams in crafting appropriate responses to social media feedback
  • To provide chronic illness culture, sensitivity and education training to all staff members and provide company guidelines on how to respond to complex situations to avoid potential insensitivities that could tarnish the brand internally or externally
  • To launch a patient ambassador program filled with dedicated, passionate community stakeholders
  • To cast condition-specific influencers to star in campaigns or represent the brand in mainstream media opportunities
  • A liaison to be a public image and voice for your brand in all matters of patient-relations
  • An expert in the field of rare disease community relations to help build your growing team with potential new hires