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Channel

Нейрофиброматоз

@neurofibromatosis

On this record: Topic · Growth · Engagement · What this channel posts · Reactions · Stars · Posts · Citations · Cite this entry

2,471subscribers

+30 since we began measuring on 6 August 2026

Risers and fallers across the register · movement among entries of 1,000–3,162.

Register entry

Telegram ID-1001160131895
TypeChannel
Username@neurofibromatosis
CreatedBetween 1 March 2018 and 31 July 2021 — estimated from Telegram’s id allocation, not measured. How this range is calculated.
First recorded6 August 2026
Last confirmed live16 September 2026
Measurements held13
Confirmed unchanged1 time, most recently 16 September 2026
On Telegramt.me/neurofibromatosis

Topic

Health & wellness — a classification, not a measurement. An on-box language model (Qwen3.6-35B-A3B-FP8, prompt version 1) read this channel’s own recent posts on 15 September 2026 and assigned it the closest of 31 fixed categories, at 98% confidence. This is a model’s judgement about what the channel is likely to be about, not a fact this register measured the way a subscriber count or a view count is measured — it can be revised on a later pass, and it carries no weight anywhere else on this page. How this classification works, and why it has no browse page of its own yet.

Growth

2,4412,4712,4566 August 2026 — 2,441 subscribers6 August 2026 — 2,441 subscribers9 August 2026 — 2,443 subscribers15 August 2026 — 2,449 subscribers18 August 2026 — 2,450 subscribers22 August 2026 — 2,452 subscribers25 August 2026 — 2,454 subscribers28 August 2026 — 2,456 subscribers31 August 2026 — 2,455 subscribers3 September 2026 — 2,457 subscribers8 September 2026 — 2,466 subscribers12 September 2026 — 2,469 subscribers16 September 2026 — 2,471 subscribers6 August 202616 September 2026
13 measurements spanning 41 days, net +30. Dots are measurements; the straight line between them is drawn to join them, not to claim we know the path taken in between — snapshots are recorded only when a count changes, so gaps mean “no change observed”, never “interpolated”. The vertical axis spans 2,437–2,476 and does not start at zero.
Measurement log — every subscribers count we have recorded
Measured (UTC)SubscribersChange
16 Sept 2026, 09:372,471+2
12 Sept 2026, 23:402,469+3
8 Sept 2026, 20:402,466+9
3 Sept 2026, 15:352,457+2
31 Aug 2026, 08:152,455-1
28 Aug 2026, 13:442,456+2
25 Aug 2026, 14:582,454+2
22 Aug 2026, 08:082,452+2
18 Aug 2026, 17:362,450+1
15 Aug 2026, 10:392,449+6
9 Aug 2026, 09:532,443+2
6 Aug 2026, 13:312,441no change
6 Aug 2026, 13:222,441first reading

Engagement

12 posts held, back to 24 June 2026the reader has not yet reached the start of this channel’s public history, so older posts may sit further back, unread. Read across 2 pages of Telegram’s post history, 20 posts per page.

Nothing published in the last 30 days. ERR and ER are rolling 30-day measures, so there is nothing to compute — we hold 12 posts for this entry, the most recent from 7 August 2026. An engagement rate over an empty window would be a number about nothing.

What this channel posts

Video runtime
1m 08s
Average length
34s

Measured directly from 2 videos with a duration reading, out of the posts we hold for this channel — not this channel’s whole posting history, only the sample this register has actually read. An exact reading to the second, taken from the post itself rather than from Telegram’s own rounded chrome, so it carries no mark.

Reaction mix

472 reactions across 12 posts, in 10 distinct kinds. The most used accounts for 48.7% of them.

Every reaction kind recorded on the sample, most used first
ReactionCountShareShare, drawn
23048.7%
🔥10021.2%
👍7816.5%
👏265.51%
🙏142.97%
❤‍🔥91.91%
😍51.06%
😢51.06%
🥰40.847%
🕊10.212%

No sentiment is inferred, and none should be read in. This table is ordered by count and by nothing else. Emoji do not carry stable meaning across languages or communities — 🙏 is thanks in one channel and mourning in another — so we publish which ones were pressed and how often, and pass no judgement on what an audience meant by them.

Precision. Telegram publishes reaction counts per emoji and short-forms each one — 4.34K, 1.2M — so any single kind at or above 1,000 reaches us at three significant figures, and only counts below 1,000 are exact. The shares above are ratios of those figures and carry the same error. This is also why the total here can differ slightly from a reaction total printed elsewhere on the page: both are sums of the same rounded parts, taken over samples with different edges.

Coverage. Reactions were read on 12 of the 12 sampled posts in this sample. Summed by Telegram’s own count on each post — not by adding up the per-emoji breakdown above — those same posts carry 472 reactions in total: the kind of figure the paragraph above means by “a reaction total printed elsewhere on the page”.

Measured over the 12 most recent posts we hold, published 24 June 2026 to 7 August 2026, using the newest reading held for each. Telegram Stars are excluded: they are a payment, not a reaction, and they have their own section.

Telegram Stars

Stars received
1
across the posts below
Posts paid on
1
of 12 we hold a reading for · 8%
Most on one post
1
single highest reading

A paid reaction is a reader spending Telegram Stars — bought with money — on a post by @neurofibromatosis. Telegram publishes the count on the public post preview alongside ordinary reactions, and this register reads it there. It is the only figure on this site that measures money moving rather than attention.

Stars are not reactions, and the two are never added. They are rendered in the same strip on Telegram and counted in the same shape, but one is a tap and the other is a purchase. The reaction totals and the engagement rate elsewhere on this page exclude every figure in this section, and no rate here is computed against a reaction count.

This is not revenue, and we publish no currency figure. What a Star costs a reader and what it pays a channel are different numbers, Telegram takes a share we cannot observe, and the terms have changed. Converting a Star count into money would be an estimate dressed as a measurement, so the count is where we stop.

Counted over the 12 most recent posts we hold for this entry, published 24 June 2026 to 7 August 2026. Star counts above 1,000 reach us in Telegram’s short form and carry the same three-significant-figure rounding as everything else on this page.

Recent posts

7 Aug 2026, 09:07 UTC308 views26 reactionsread 7 August 2026
Photo

Друзья, в этом году мы приглашаем вас присоединиться к акции «Дети вместо цветов». Суть акции: вместо множества отдельных букетов от каждого ученика 1 сентября подарить учителю один общий от всего класса, а сэкономленные средства направить на благотворительность. Все собранные средства пойдут на организацию мероприятий для детей с нейрофиброматозом. Чтобы присоединиться к акции, нужно: 1. Договориться с учителем и р

16👍7❤‍🔥3

4 Aug 2026, 06:55 UTC544 views13 reactionsread 7 August 2026

Новый день и новая операция у пациентки с нейрофиброматозом! 💥 Спасибо всем пациентам, которые дают разрешение на съемку и делятся своим опытом удаления фибром, это очень важно для других пациентов, которые боятся или пока не определились! 💕 И мы конечно же бесконечно благодарны замечательным хирургам Медпарка и хирургу-оториноларингологу Лопатину Дмитрию Геннадьевичу за профессионализм и трепетное отношение к наши

🔥83👍2

4 Aug 2026, 06:55 UTC469 views55 reactionsread 7 August 2026
Forwarded from @plastica_medparkVideo

На днях мы провели ещё одну операцию для пациентки с диагнозом нейрофиброматоз 🍃 У Ольги фиброма располагалась на носу — зоне со сложной анатомией, где важно сохранить и форму, и функцию дыхания, поэтому операцию провели комплексно, в тандеме с врачом оториноларингологом-хирургом высшей категории, к.м.н Лопатиным Дмитрием Геннадьевичем 🪡

28👏15🙏10🔥2

31 Jul 2026, 12:02 UTC869 views57 reactionsread 7 August 2026

Posted without readable text

🔥30👍108❤‍🔥6🥰2🕊1

31 Jul 2026, 12:02 UTC711 views30 reactionsread 7 August 2026
Photo

Photo, posted without a caption

🔥196😍5

23 Jul 2026, 11:13 UTC990 views65 reactionsread 7 August 2026
Forwarded from @plastica_medparkVideo

Мы гордимся тем, что можем быть частью таких важных изменений и благодарим за доверие!🪡

39👍11🔥11👏3🙏1

23 Jul 2026, 11:13 UTC≈1,010 views39 reactions1 Starread 7 August 2026

Друзья! Вчера хирурги из кемеровской клиники "Медпарк" провели операцию нашей пациентке Светлане, которой мы все вместе совместно с благотворительным фондом "Правмир" собирали на удаление фибром! 💫 Мы напоминаем, что если у вас есть большое количество фибром по телу (которые вы не можете удалить в рамках омс), а также финансовые сложности в их удалении в платных клиниках, вы можете обратиться к нам на Горячую линию

23👏8🔥8

20 Jul 2026, 18:34 UTC≈1,360 views35 reactionsread 7 August 2026
Photo

Друзья, напоминаем, что у нас есть отдельный чат для подростков с нейрофиброматозом и шванноматозами. Мы добавляем туда детей с 12 до 17 лет включительно. В чате ребята знакомятся, общаются, находят общие интересы и поддерживают друг друга. Каждый родитель может добавить своего ребенка с НФ или ШВНМ в чат, заполнив анкету по ссылке: https://forms.yandex.ru/u/6a2c2147d046885669938d15/

19👍8🔥8

17 Jul 2026, 12:56 UTC≈1,240 views25 reactionsread 7 August 2026
Photo

Друзья, с связи с участившимися вопросами по поводу возможности получения консультаций у врачей онлайн, напоминаем: вы можете получить онлайн-консультации напрямую у докторов-экспертов в нейрофиброматозе в клинике «Медпарк»: 💚детский онколог Мареева Юлия Михайловна (диагностика и лечение опухолей, в том числе плексиформной нейрофибромы, консультирование по поводу ежегодных обследований и интерпретации их результатов

21👍3🔥1

13 Jul 2026, 06:43 UTC≈1,340 views27 reactionsread 7 August 2026
Photo

Друзья, напоминаем: 19–20 сентября во Владивостоке совместно с Медико-генетическим центром ФГБОУ ВО «ТГМУ» Министерства здравоохранения РФ пройдёт Школа по нейрофиброматозу для пациентов и врачей. Мероприятие рассчитано на два дня: первый день, 19 сентября, посвящён врачам, второй, 20 сентября, — пациентам и их семьям. Если вы ещё не зарегистрировались, очень просим вас это сделать — ваше участие крайне важно для нас

👍15🔥84

27 Jun 2026, 11:21 UTC≈2,110 views61 reactionsread 7 August 2026
Photo

Друзья, мы рады сообщить, что решением Экспертного совета и совета попечителей Фонда «Круг добра» препарат для лечения неоперабельных симптоматических плексиформных нейрофибром Селуметиниб в новой лекарственной форме капсул с гранулами включен в перечень лекарственных препаратов, закупаемых Фондом. Это значит, что если вашему ребенку назначено лечение прексиформной нейрофибромы, то вы можете начать лечение уже с года

39👍14🔥5🙏3

24 Jun 2026, 08:50 UTC≈1,940 views39 reactionsread 6 August 2026
Photo

Друзья, и снова пришло время всем вместе поддержать одного и нас 💙💚 Сегодня наш партнер Благотворительный фонд «Правмир» открыл сбор для нашей пациентки Светланы. Прочитайте ее историю и давайте совместными усилиями поможем Светлане облегчить ее жизнь. https://fondpravmir.ru/causes/usolczeva-svetlana/

24👍8😢5🥰2

Showing the 12 most recent of 12 posts we hold for @neurofibromatosis. View and reaction counts are the latest single reading for each post, not a live figure, and a recent post is still accumulating both. A view count marked was rounded by Telegram before we ever saw it — t.me prints views in full below 1,000 and to three significant figures above, so ≈1,200,000 means somewhere between 1,150,000 and 1,249,999. Unmarked counts are exact. Text is reproduced from the public post preview and truncated for length.

Stars beside a post are paid reactions — Telegram Stars, bought with money and spent on that post. They are a different unit from reactions and are never added to them, here or anywhere else on this page.

Forward network

Republishes

Channels on the register whose posts this channel has forwarded.

Built only from forwarded posts we have actually read, on both sides. Coverage is early and deliberately incomplete: a missing link means we have not read the post that would prove it, never that the relationship does not exist. Counts are distinct forwarded posts observed, so they only ever go up as we read more.

Mentions

Named by 2 registered channels — every channel on the register whose own posts have named this one, by its current username or any other username it currently holds, merged from two separately captured readings of the same fact so a namer caught by only one of them is not missed and a namer both caught is not counted twice. A username this channel has since dropped is not matched — that handle may belong to someone else now, and crediting today’s namer to yesterday’s owner would misattribute it.

A mention is a weaker signal than a forward and is counted separately for that reason — naming a channel is not republishing it, and a handle in a post body is easy to place deliberately. The post counts beside each row below are distinct posts in which the handle appeared, from posts we have read on both sides — the “Named by N registered channels” figure above is a different count, of distinct NAMING CHANNELS rather than posts, and is not the sum of the rows under it.

Cite this entry

A live page changes as we take new readings, so a citation should name the measurement it is based on, not just the URL. The line below cites the subscriber count as measured 16 September 2026 — this entry's latest reading, not the date you are reading this.

“Нейрофиброматоз” (@neurofibromatosis), 2,471 subscribers as measured 16 September 2026. Telegram Register, tgregister.com/channel/neurofibromatosis.

Full measurement history, CC BY 4.0. Every reading this register holds for this entry, not just the latest one, as a dated, downloadable record: CSV · JSON. Free to use with attribution to tgregister.com. Each file carries its own generation timestamp, which is the figure to cite for exactly when the data was retrieved.