Cancer Advocacy


Rare cancer challenges

Patients with very rare cancers will encounter a number of potentially significant challenges that will create difficulty and stress for them. This may be direct, but can also be because of the challenges that patients with ultra-rare diseases will face due to the limited focus they receive. These may include, but will not be limited to the following:

  1. A lack of knowledge and awareness about EHE, even amongst the medical community. This has resulted in several of our members experiencing difficult diagnoses.
  2. A lack of understanding in some clinicians as to why the patient is asking questions about experience of the disease, and a possible desire to be referred to another doctor of sarcoma centre;
  3. A lack of coordinated capture of data and biological samples from patients with the disease, all of which would significantly help in improving clinical understanding and research progression;
  4. A lack of interest, focus and funding from government and pharmaceutical companies because patient numbers are so small;
  5. regulatory practices that have been developed for common diseases, and have created information and statistical requirements that ultra-rare cancers cannot satisfy with resultant delays and failures to get important drugs to patients;
  6. A lack of funding from larger donors and cancer charities who may be unaware of the disease.

The overall effect of all these factors can appear daunting, presenting as insurmountable hurdles and resulting in feelings of hopelessness, leaving individual patients feeling scared and isolated.

Advocating for change

It is to combat the above challenges that the EHERCC has prioritised, as a key component of its main objectives, the raising of awareness of EHE. We will strive to do this in the medical world, including oncology centres; within government and funding agencies and foundations; and with the general public. We passionately believe that it is only by dealing with these challenges head on that we can make a difference.

Our programme to grow awareness of EHE is largely based on communicating to different audiences at every opportunity. As Chair of Trustees, Hugh Leonard has participated in multiple fundraising events where he has been able to talk to an engaged audience about the disease. In 2022, Hugh was also given the privilege of speaking at the prestigious ESMO2022 Congress in a session entitled ‘Ultra-rare sarcoma: Navigating an endless sea‘ where he was able to describe the challenges faced by ultra-rare cancers.

We are determined to do all we can to increase expenditure on research into rare cancers, including EHE, so that those with rare cancers are not forgotten and their cancers are included within the overall cancer research effort. We do not believe this would be at the cost of research into common cancers. As so little is currently spent on research into rare cancers, small increases in funding would represent substantial increases in percentage terms and generate significant progress. We will continue to work hard to deliver this.

We are working hard with the clinical community to secure early approval for drugs that are shown to be efficacious for EHE. This involves a concerted effort to engage with regulators to explain the challenges their procedures create for ultra-rare cancers, and to jointly explore new ways to reach the same objective – delivering beneficial drugs to patients who need them as a matter of priority.

We recognise that other rare cancer and rare disease organisations are working hard as they too advocate for greater awareness and positive change for rare diseases including sarcomas. In the UK and Europe we are members of four such organisations, shown below, with whom we engage on advocacy issues that are important to the EHE community.

Cancer52 (UK)
Rare Disease Europe (EURODIS)
European Cancer Patient Coalition (ECPC)
Sarcoma Patient Advocacy Global Network (SPAGN)

At all times we keep at the forefront of our campaigns the simple fact that rare cancers are not rare to those who have them. They are very real, very frightening and sadly, in too many cases, fatal. We hope you will join us in working to make a difference for patients with EHE and other rare cancers.