Raremark in November: Making a difference

I was co-moderator at a round table during the World Orphan Drug Congress in Barcelona.

This November, in the Raremark community, we’ve been talking about how the members of our different rare disease communities are making a difference through sharing experiences.

November’s most-read story:

Lisa shared the story of her children’s road to being diagnosed with eosinophilic esophagitis (EoE), a chronic, allergic, inflammatory condition of the esophagus.

Alex and Lynzy’s EoE story

Featured stories:

In our myasthenia gravis (MG) community, we’ve seen over 500 people take part in surveys and 20 members of the community contributed to a research study about a specific subtype of the disease.

How is the MG community making a difference?

Also this month, our adrenoleukodystrophy (ALD) community have been taking part in a survey in collaboration with ALD Life, the lead patient group for families with ALD and adrenomyeloneuropathy (AMN) in the UK, on a survey focused on the impact of AMN on men in the UK.

Adrenomyeloneuropathy survey for men

It’s so easy to forget how many other Rare Diseases there are, and how many others are looking for a cure. :smirk: xB

Out of the 7000-8000 rare diseases only approx 400 have some form of treatment.

It will take time, money and smart “think outside the box” people.