Call for action: As patients and HCP’s please give your input on patient information leaflets (PIL) and medicine guides

your input will help us understand the needs, challenges and expectations regarding this important information, co-create tools to increase patient involvement in the development of patient information leaflets… Read More Call for action: As patients and HCP’s please give your input on patient information leaflets (PIL) and medicine guides

There’s still time to REGISTER for this conference on RARE DISEASE AND ORPHAN DRUGS 1 – 2 October

The goal of this Conference is uniting all well-known clinical researchers, biotech professionals, Medical Advisories, Academicians and decision makers to discuss possible ways to accelerate orphan drug development and access to rare disease patients, including the introduction of recent technologies and products to help aid the access of orphan drugs… Read More There’s still time to REGISTER for this conference on RARE DISEASE AND ORPHAN DRUGS 1 – 2 October

Are you aware of this #Rare? Today is International Ataxia Awareness Day.

International Ataxia Awareness Day (IAAD) is on September 25 of each year. It is a coordinated effort from individuals and Ataxia organisations around the world to help shed light on this rare disease. #IAAD… Read More Are you aware of this #Rare? Today is International Ataxia Awareness Day.

Are you aware of this #Rare? | Wolfram Syndrome UK Virtual Conference 2020 | 19th and 26th September

Wolfram Syndrome is a rare genetic disorder which is also known as DIDMOAD syndrome after its four most common features: Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy and Deafness… Read More Are you aware of this #Rare? | Wolfram Syndrome UK Virtual Conference 2020 | 19th and 26th September

Almost there! Will you join us to talk about ‘Reaching patients and educating patients using agile social media strategies’​?

#RegisterNow & join me at the
@RE_Pharma
#Pharma #Patient #Europe 2020
PATIENS CAN ATTEND FOR FREE
#Digital Conference & Expo
15-16 September
#pharma #patient #patientengagement #patientcentricity #REpharmaPatient #socialmediastrategy #DrugDevelopment #communications #clinicaltrials… Read More Almost there! Will you join us to talk about ‘Reaching patients and educating patients using agile social media strategies’​?

Pigmented Villonodular Synovitis (PVNS) our Co-Founder’s patient experience with ultra rare disease. #dazzle4rare2020

After having constant dislocations in my knee where the PVNS tumour was removed from 6 years years previously had caused major damage. This was worsened with my hEDS which effects all of my joints. … Read More Pigmented Villonodular Synovitis (PVNS) our Co-Founder’s patient experience with ultra rare disease. #dazzle4rare2020

It is time to ‘dazzle’, ‘strut your stripes’ and share ‘rare voices’ for #dazzle4rare2020! 9 – 14th August

Many rare disease communities are very small which makes it hard to raise awareness by themselves, so through joining forces during this week their voices are strengthened in numbers and become one giant ‘united voice’ for rare disease awareness.… Read More It is time to ‘dazzle’, ‘strut your stripes’ and share ‘rare voices’ for #dazzle4rare2020! 9 – 14th August

Where can you find Fibromyalgia and Chronic Pain resources across the Globe? Find out here!

Chronic Pain management can be a really difficult thing to master, please don’t give up as it can take time, perseverance and a lot of positive attitude until you find your balance with it.… Read More Where can you find Fibromyalgia and Chronic Pain resources across the Globe? Find out here!

Reflexology reduces anxiety and improves quality of sleep in informal carers — Federation of Holistic Therapists (FHT) – BACK PAIN BLOG UK…

  Family and friends are very often the primary caregivers for patients with cancer, despite not being paid or having any formal training, and can commonly experience sadness, anxiety, fatigue and sl… Source: Reflexology reduces anxiety and improves quality of sleep in informal carers — Federation of Holistic Therapists (FHT) – BACK PAIN BLOG UK…