Light cells foundation

Light cells foundation
Legal form:	non-profit foundation under civil law
Purpose:	The purposes of the foundation are implemented by Advice, training and support; Promoting research; Promoting measures to improve diagnosis and treatment,; Educating and raising public awareness;
Chair:	Hans-Jürgen Riegel, Melanie Vanden-Brande
Board of Trustees:	Jens Panse, Alexander Röth, Dorett Riegel, Hans Michael Riegel
Board of Trustees:	Tim Brümmendorf , Hubert Schrezenmeier
Managing directors:	Pascale Burmester
Consist:	2013
Founder:	Hans-Jürgen Riegel
Seat:	Cologne
Website:	www.lichterzellen.de

The Foundation lights cell is a German foundation under civil law, which is active throughout Germany and German-speaking countries. She is committed to research into the rare disease aplastic anemia and the very rare disease paroxysmal nocturnal hemoglobinuria , both of which often occur in combination.

The foundation was founded in December 2013 by Hans-Jürgen Riegel , is entered in the foundation register of the Ministry of the Interior of North Rhine-Westphalia and is financed exclusively from donations.

Foundation purposes

The purpose of the foundation is to offer affected patients and their relatives information and help, to make the disease better known and to educate about it, as well as to advance research on both diseases.

Projects

Emergency ID and patient pass

On request, the foundation will send a patient passport and ID card to affected patients. The patient pass with the medically relevant facts tailored to the disease serves as information for a doctor in an emergency.

information

The foundation offers patients, relatives and interested parties information on the website. There you will find information on the diseases aplastic anemia and PNH, current studies, videos in which specialized doctors answer patient questions, tips on living and dealing with aplastic anemia and PNH, information on contact and exchange options, nutrition tips, patient reviews, information to the foundation.

Second opinion grant

In the case of rare diseases such as aplastic anemia and PNH, it is advisable to obtain a second medical opinion. Specialized doctors with sufficient experience are just as rare as the diseases themselves. It can happen that those affected have to travel to an appointment and spend the night away. The health insurances usually cover the costs for the doctor's appointment, but those affected have to bear the travel and accommodation costs themselves. The foundation lights cell assumes the additional costs, on request, if patients can not afford these costs. and for these reasons shy away from a second opinion.

Self-help forum

The Stiftung Lichterzellen provides the platform for exchange, the forum is moderated and independent and thus meets the criteria for self-help internet forums of the National Contact and Information Center for the Stimulation and Support of Self-Help Groups (NAKOS). The foundation's online forum had over 12,800 entries and increasing user numbers in mid-2018. It is the only German-language online forum for exchange for patients and relatives with aplastic anemia and PNH and was founded in 2005 by Johannes Thimmel, who died in 2013 of complications from the disease.

Patient hotline

The foundation has set up consultation hours for patients and relatives. There, patients and relatives are advised on issues relating to life with the diseases. You will receive information and emotional support.

Basic kit

In order to offer patients quick orientation after the diagnosis, the foundation has put together a kit in which the patient receives information about the foundation and its offers, the patient ID card and passport, a USB stick with expert videos, a fatigue diary and addresses of specialists Find treatment centers and a key fob for emergency pills.

research

In the years 2014–2016, the foundation made a significant contribution to the establishment of the German register for aplastic syndromes and telomeropathies at RWTH Aachen University . By collecting and evaluating data from patients with aplastic anemia, new knowledge about the diagnosis and treatment of aplastic anemia has already been gained. The patients who have aplastic anemia due to a shortening of the telomere length require special therapy and specialized care, which has been developed within the framework of the registry.

Advocacy

The foundation is networked with other patient organizations worldwide in order to obtain current information and to represent patients in Germany in the best possible way.

Further research projects are planned in the future.

light cells research award

The lichter zellen research award is awarded for special research work in the fields of hematology, medicine, pharmacy or biology as well as health services research and is endowed with 5000 €. It has been awarded since 2018.

public relation

The foundation lights cells has set itself the goal of making the disease aplastic anemia and PNH known. The better known the diseases and the problems associated with them, the more people see the need and need to help affected people and to advance research. Likewise, increased awareness means doctors are more likely to consider these rare diseases more quickly, so that patients can get a diagnosis more quickly and be treated more quickly. It is also intended to improve understanding for affected patients and their families. The foundation will u. a. supported by Horst Lichter .

Memberships

The foundation lights is cell-member Association of German Foundations .