SUPPORT * AWARENESS * FRIENDSHIP

We are a voluntary organisation supporting people with Alopecia Areata

Check out the NAAF Webinars
(National Alopecia Areata Foundation Webinars)

New initiatives…

No Hair, Who Cares

Emma is reaching out as someone who has lived with alopecia for the past 22 years. Having experienced firsthand the emotional and social challenges that can come with hair loss, she is in the process of launching a small but heartfelt community initiative called "No Hair, Who Cares."

The aim of this project is to support individuals affected by alopecia and hair loss in Donegal and the North West of Ireland, starting with a local focus and the hope of growing with time. The initiative will offer a mix of community support, information, and advocacy.

 I am soon-to-launch an online platform with peer stories, salon/wig directories, dermatologist listings, and research updates. Information on government funding and grants and I am working on collaborations with local salons to offer quiet hours for clients who may feel more comfortable in a private setting.

To help me better understand the local needs I am conducting a research survey across the Northwest and I would really appreciate it if you would be open to sharing it on your socials to help get the reach it needs. 

Survey Link https://forms.gle/kSMgd6zzdj7kvdRK7

Facebook post with link to survey -

https://www.facebook.com/share/p/16NNfeSuUH/

 📧 Info@nohairwhocares.ie

📱 Instagram nohairwhocaresnorthwest

National Centre for Pharmacoeconomics (NCPE)

The National Centre for Pharmacoeconomics (NCPE) has contacted us about about making a patient group submission for:

Ritlecitinib (Litfulo®) for the treatment of severe alopecia areata in adults and adolescents 12 years of age and older

To assist in the submission process, we are looking for input from members of the Alopecia Ireland community. If you would like to be part of the submission process, please click.

To help reach as many people as possible, we will organise Zoom sessions for this process.

If you would like to speak with someone living with alopecia, please complete this form.

 

National and International Skin Registry Solutions CLG (NISR) 

The role of NISR is to collect and protect the data of consenting patients with specific dermatological conditions.

The role of NISR is to collect and protect patient data. We do not own any of this data, but act as stewards for the patients who wish for their experiences to be studied. We will never sell patient data. We act as an interface between the patients data and researchers. Permission to use the data is only given to researchers who have met all of our legal, ethical and safety criteria and show a clear research purpose and output strategy for the results.

We do not collect data to generate a profit for NISR, our Board do not receive any financial benefit from volunteering to work for NISR.

We serve our registry participants by providing a standardized structure that protects their data at an international level and a disease specific oversight to promote research focuses on what will most benefit patients.

We expect that we may by approached by companies to assist them in linking with patients who have given their informed consent to be contacted about participation in clinical trials or assess epidemiology of patients.

Our registry participants deserve the best data management, governance and clinical expertise managing their data. With all of the related process held to the highest ethical, legal, scientific and clinical standards. 

These are the principles NISR is structured on. 

Find out more by clicking on the scroll bar below…

A disease registry is a special database that contains information about people diagnosed with a specific type of disease.

〰️ more information on the NISR website 〰️

A disease registry is a special database that contains information about people diagnosed with a specific type of disease. 〰️ more information on the NISR website 〰️

Prof. Desmond J. Tobin of the Charles Institute of Dermatology (UCD School of Medicine, Belfield) is asking for our help with a research project coming up.

Please answer these two questions and if you are happy to take part in the research, please complete the contact information in the survey below.

All research brings us a little closer to finding answers…

MANY THANKS IN ADVANCE EVERYONE

  1. The Charles Institute of Dermatology at the UCD School of Medicine is researching links between Alopecia Areata and Coeliac Disease. They are trying to determine how commonly these conditions co-exist. 

    Please take part in the following survey which consists of two simple questions? 

Grant for Wigs announced on 25 May 2022

Alopecia is in the news…

Oscars 2022 opens wide the discussion about alopecia.

Newsflash… 25 November 2021

€500 annual grant for wigs on the way for those suffering hair loss from illness

(Irish Times report)

The grant will be available from the end of May 2022. The grant will only be available for hair loss in respect of a disease and not due to aging or other natural causes. It will be subject to the normal conditions of the treatment benefit scheme in terms of the required number of PRSI contributions. Legislative provisions for this measure will be set out in the social welfare Bill 2021, which will be published and brought through the Houses of the Oireachtas…

We are a small group of committed volunteers who offer our time and experiences to help others who are on the Alopecia Areata journey.

All of us are already living with Alopecia Areata.

We offer support through meetings, regular email updates, Facebook presence, including a specific Facebook page for children, a website with the latest alopecia related articles and research, plus an option to chat with one of us via Zoom.