Patient
Profiles

Who are suitable patients for RUCONEST®?

Treatment goals

Most patients would like a cure for their HAE and a life free from attacks.2

However, until a cure is found, patients would like to be empowered to stop attacks when they happen.2

Treatment goals for patients with HAE include a treatment that:2

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More effectively manages their HAE so they can live with more confidence

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Is convenient and effective

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Does not disrupt their daily life and activities

Patient profiles

Meet our patients. How could treatment with RUCONEST® benefit them?

Liam

Aged 44

Brief background

  • Diagnosed at 18 years
  • Mother and sister have HAE
  • Divorced and currently lives alone

Work and lifestyle

  • Inspector on London rail network
  • Anxious about having an HAE attack at work, although his colleagues are supportive


Goals

  • Wants to progress in his job, but is anxious about getting an attack so worries about asking for more responsibility at work
  • Wants to be able to manage breakthrough attacks with a treatment that works quickly with one dose

Clinical profile

  • Danazol 200mg/day for several years
  • Switched to icatibant 30 mg when he was 32
  • Attacks increased in frequency, switched to C1 IV prophylaxis, still experiencing 2-3 attacks per month (means he is IV trained)
  • Now on prophylaxis with lanadelumab 300 mg every 3 weeks
  • Has experienced breakthrough attack every 4-5 months, uses icatibant to treat these, but symptoms are not always resolved
  • Has suffered 3-4 laryngeal attacks per year and is very anxious about having further severe attacks

Personal information

  • Liam wants to get over his anxiety about having an HAE attack which is restricting his lifestyle

Not a real patient. For illustrative purposes only.

Joachim

Aged 26

Brief background

  • First attack aged 17 just before starting university course
  • Father and uncle both have HAE

Work and lifestyle

  • Post-graduate student in engineering
  • Lives with fiancé
  • Volunteer with youth group, keen gamer and wants to travel


Goals

  • Wants to go on holiday and to continue volunteering without the worry of attacks

Clinical profile

  • On demand treatment with icatibant at a dose of 30 mg subcutaneously
  • He has had 4 attacks in the last 3 months
  • First was dealt with quickly with one dose, but for the others he needed 2 injections and ended up going to A&E twice, including for a laryngeal attack

Personal information

  • Fiancé is supportive and helps with treatment
  • Joachim wants to lead a normal life, and to have confidence that his treatment will manage his attacks in a single

Not a real patient. For illustrative purposes only.

Sylvie

Aged 50

Brief background

  • Diagnosed at 15 years
  • Married with two children, one has HAE

Work and lifestyle

  • Works as a primary school teacher


Goals

  • Leads a busy life and is looking for stability with a treatment that works first time
  • Doesn’t want the children at school and people around her to be affected by her attacks
  • Ambitious to continue to progress in her career without HAE holding her back

Clinical profile

  • Treated with on-demand Cinryze® 1000 IU plasma-derived C1-inhibitor for acute attacks
  • She finds that there are quite a number of times that she needs to redose which is inconvenient

Personal information

  • Husband is supportive and will help administer treatment for her and their son
  • Sylvie wants stability and to be able to manage her breakthrough attacks effectively, without disrupting her life
  • She wants her son to be able to manage his attacks effectively and not to let HAE negatively affect his life

Not a real patient. For illustrative purposes only.

Patient treatment experience log

Patients with HAE who are self-treating at home may sometimes experience issues with controlling their condition. These may be disease or treatment related. One issue in particular which may be worrying for patients is the need to redose, because of a failure of the first on-demand treatment dose to resolve their symptoms.

Pharming has developed a Treatment Experience Log provided in questionnaire format to support patients in recording their experiences of treating their HAE attacks, and encouraging them to share their responses with you – their healthcare provider – at their next appointment.

The questionnaire is available via: https://wearehae.eu/ and https://hae-patient.eu/ (for patients prescribed Ruconest® only). You can also download here along with a Guide for Healthcare Professionals providing brief guidance on each question to help you interpret the answers that patients may give.

We hope you find that both the questionnaire and this guide are helpful in stimulating conversations between you and your HAE patients regarding their treatment experience.

Patient
treatment
experience log

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Guide for
Healthcare
Professionals

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References

  1. RUCONEST® SmPC. July 2023.
  2. Validated at a series on interviews with HAE physicians from the UK, the Netherlands, Italy, Spain, France, Czech Republic, and Poland.